1 00:00:04,946 --> 00:00:05,446 WE HAVE A TIGHT SCHEDULE 2 00:00:05,446 --> 00:00:06,280 TODAY SO THAT'S WHY WE'RE 3 00:00:06,280 --> 00:00:08,516 STARTING RIGHT ON TIME. 4 00:00:08,516 --> 00:00:13,054 AND I PROMISE TO BE VERY BRIEF. 5 00:00:13,054 --> 00:00:17,425 MY NAME IS CHERI WIGGS THE 6 00:00:17,425 --> 00:00:18,459 PROGRAM DIRECTOR OF THE LOW 7 00:00:18,459 --> 00:00:22,697 VISION BLINDNESS REHABILITATION 8 00:00:22,697 --> 00:00:23,898 AT THE NATIONAL EYE INSTITUTE 9 00:00:23,898 --> 00:00:27,969 AND IT'S MY PLEASURE TO WELCOME 10 00:00:27,969 --> 00:00:30,271 YOU TODAY WHO ARE GOING TO BE 11 00:00:30,271 --> 00:00:33,040 ENGAGING IN IMPORTANT 12 00:00:33,040 --> 00:00:33,341 DISCUSSIONS. 13 00:00:33,341 --> 00:00:36,877 I THINK THE AIMS ARE CLEAR BUT 14 00:00:36,877 --> 00:00:40,014 THEY'RE WORTH RESAYING RIGHT NOW 15 00:00:40,014 --> 00:00:43,384 WE WANT TO EXPAND AWARENESS OF 16 00:00:43,384 --> 00:00:46,287 CVI, BUILDING CENSUS IN THE 17 00:00:46,287 --> 00:00:47,288 FIELD AND IDENTIFYING TECHNICAL 18 00:00:47,288 --> 00:00:49,890 AND PRACTICAL AGENCY SPECTS OF 19 00:00:49,890 --> 00:00:51,459 CREATING A CEREBRAL VISUAL 20 00:00:51,459 --> 00:00:52,693 IMPAIRMENT REGISTRY. 21 00:00:52,693 --> 00:00:57,565 THAT'S GOING TO INVOLVE 22 00:00:57,565 --> 00:01:02,136 IDENTIFYING ISSUES ON 23 00:01:02,136 --> 00:01:03,938 DIAGNOSTICS AND FOR IDENTIFYING 24 00:01:03,938 --> 00:01:04,605 THE NEXT SCIENTIFIC STEPS THAT 25 00:01:04,605 --> 00:01:06,974 WILL ADVANCE THE FIELD. 26 00:01:06,974 --> 00:01:11,112 SO WE'VE INVITED ALL OF YOU HERE 27 00:01:11,112 --> 00:01:12,947 TO TRULY INFORM THIS EFFORT. 28 00:01:12,947 --> 00:01:18,052 SO IN OUR AUDIENCE AND IN OUR 29 00:01:18,052 --> 00:01:19,820 PARTICIPANTS TODAY, WE HAVE 30 00:01:19,820 --> 00:01:20,988 CLINICIANS, RESEARCHERS IN CVI 31 00:01:20,988 --> 00:01:24,592 AND IN RELATED DEVELOPMENTAL 32 00:01:24,592 --> 00:01:25,292 DISORDERS. 33 00:01:25,292 --> 00:01:26,293 PATIENTS, CAREGIVERS, 34 00:01:26,293 --> 00:01:28,429 OCCUPATIONAL THERAPISTS AND 35 00:01:28,429 --> 00:01:29,030 TEACHERS CERTIFIED IN VISUAL 36 00:01:29,030 --> 00:01:30,965 IMPAIRMENT. 37 00:01:30,965 --> 00:01:34,068 THIS MEETING IS OPEN TO THE 38 00:01:34,068 --> 00:01:36,370 PUBLIC SO IT'S BEING VIDEOCAST 39 00:01:36,370 --> 00:01:38,272 IN REAL TIME AND FOR THOSE OF 40 00:01:38,272 --> 00:01:42,276 YOU WHO ARE TUNED IN WE'RE HAPPY 41 00:01:42,276 --> 00:01:44,512 TO HAVE YOUR ATTENTION. 42 00:01:44,512 --> 00:01:47,481 A FEW QUICK PROCEDURALS. 43 00:01:47,481 --> 00:01:49,683 IF YOU HAVEN'T ALREADY, PLEASE 44 00:01:49,683 --> 00:01:50,951 SILENCE YOUR CELL PHONES. 45 00:01:50,951 --> 00:01:54,955 USE THE MICROPHONES IN THE ROOM 46 00:01:54,955 --> 00:01:56,457 WHEN YOU ARE ASKING QUESTIONS. 47 00:01:56,457 --> 00:01:58,859 FOR THOSE HERE ON THE PODIUM, 48 00:01:58,859 --> 00:02:02,897 YOU'LL HAVE A MICROPHONE 49 00:02:02,897 --> 00:02:03,864 AVAILABLE TO YOU. 50 00:02:03,864 --> 00:02:05,132 AND BECAUSE OF OUR VERY TIGHT 51 00:02:05,132 --> 00:02:07,501 SCHEDULE WE MAY NEED TO REMIND 52 00:02:07,501 --> 00:02:09,503 FOLKS ABOUT TIME KEEPING, PLEASE 53 00:02:09,503 --> 00:02:10,704 DON'T KEEP IT PERSONALLY BUT 54 00:02:10,704 --> 00:02:12,673 WE'RE KEEPING AN EYE ON THE 55 00:02:12,673 --> 00:02:15,776 CLOCK TO MAKE SURE WE HEAR FROM 56 00:02:15,776 --> 00:02:16,710 EVERYONE TODAY. 57 00:02:16,710 --> 00:02:19,213 MANY INDIVIDUALS HAVE PUT QUITE 58 00:02:19,213 --> 00:02:22,650 A BIT OF HEART AND I'D SAY BRAIN 59 00:02:22,650 --> 00:02:24,752 INTO THIS EFFORT AND I WOULD 60 00:02:24,752 --> 00:02:29,857 LIKE TO SHOUT OUT TO DR. GORDON 61 00:02:29,857 --> 00:02:32,159 AND CURVE OF THE NATIONAL EYE 62 00:02:32,159 --> 00:02:37,131 INSTITUTE WHO HAVE BEEN 63 00:02:37,131 --> 00:02:43,471 TIRELESS -- AND OUR CO-CHAIRS, 64 00:02:43,471 --> 00:02:52,713 DR. CHANG AND MERABET AND HAVE 65 00:02:52,713 --> 00:02:53,314 BEEN INSTRUMENTAL AND PERHAPS 66 00:02:53,314 --> 00:02:53,848 MORE TIRELESS IN BRINGING 67 00:02:53,848 --> 00:02:54,315 TOGETHER THIS EFFORT. 68 00:02:54,315 --> 00:02:57,485 THIS MEETING IS A TRANS-NIH 69 00:02:57,485 --> 00:03:00,554 EVENT AND INVOLVED THE NATIONAL 70 00:03:00,554 --> 00:03:01,655 EYE INSTITUTE AND THE NATIONAL 71 00:03:01,655 --> 00:03:04,725 INSTITUTE ON NEUROLOGICAL 72 00:03:04,725 --> 00:03:06,293 DISORDERS AND STROKE AND THE 73 00:03:06,293 --> 00:03:06,927 EUNICE KENNEDY SHRIVER INSTITUTE 74 00:03:06,927 --> 00:03:08,129 OF CHILD HEALTH AND HUMAN 75 00:03:08,129 --> 00:03:08,863 DEVELOPMENT. 76 00:03:08,863 --> 00:03:10,698 I ENDED WITH THE LAST ONE 77 00:03:10,698 --> 00:03:11,832 BECAUSE IT'S AN EXCELLENT SEGUE 78 00:03:11,832 --> 00:03:16,437 FOR ME TO INTRODUCE DR. CRUZ 79 00:03:16,437 --> 00:03:17,738 FROM NIH WHO HAS INTRODUCTORY 80 00:03:17,738 --> 00:03:27,781 REMARKS TO SHARE. 81 00:03:27,781 --> 00:03:31,685 >> WELCOME TO THE CEREBRAL 82 00:03:31,685 --> 00:03:32,786 VISUAL IMPAIRMENT ROAD MAP TO 83 00:03:32,786 --> 00:03:34,121 CONSENSUS AND BUILDING 84 00:03:34,121 --> 00:03:34,722 AWARENESS. 85 00:03:34,722 --> 00:03:37,725 YOUR HOST TODAY ARE THE NATIONAL 86 00:03:37,725 --> 00:03:38,993 EYE INSTITUTE, THE NATIONAL 87 00:03:38,993 --> 00:03:40,294 INSTITUTE OF CHILD HEALTH AND 88 00:03:40,294 --> 00:03:42,029 HUMAN DEVELOPMENT AND THE 89 00:03:42,029 --> 00:03:43,097 NATIONAL INSTITUTE OF 90 00:03:43,097 --> 00:03:43,797 NEUROLOGICAL DISORDERS AND 91 00:03:43,797 --> 00:03:44,031 STROKE. 92 00:03:44,031 --> 00:03:46,267 I ALSO WANT TO WELCOME YOU ON WE 93 00:03:46,267 --> 00:03:50,704 HALF OF CO-CHAIRS, DR. MERABET 94 00:03:50,704 --> 00:03:54,275 OF MASSACHUSETTS, EYE, HERE 95 00:03:54,275 --> 00:03:59,980 MEDICAL SCHOOL AND MELINDA CHANG 96 00:03:59,980 --> 00:04:00,581 OF CHILDREN'S HOSPITAL OF LOS 97 00:04:00,581 --> 00:04:00,814 ANGELES. 98 00:04:00,814 --> 00:04:01,248 I HAVE TO START BY 99 00:04:01,248 --> 00:04:01,815 CONGRATULATING YOU ALL FOR 100 00:04:01,815 --> 00:04:03,350 FINDING THIS ROOM, GETTING 101 00:04:03,350 --> 00:04:05,786 THROUGH SECURITY AND PAST THE 102 00:04:05,786 --> 00:04:06,754 DOGS AND ALL THAT. 103 00:04:06,754 --> 00:04:11,625 SO FIRST, THUMBS UP FOR YOUR 104 00:04:11,625 --> 00:04:12,459 FIRST TRIAL OF THE DAY. 105 00:04:12,459 --> 00:04:15,563 I WANT TO WELCOME ALL THE PEOPLE 106 00:04:15,563 --> 00:04:17,498 ON VIDEOCAST. 107 00:04:17,498 --> 00:04:21,802 PARTICULARLY ANYONE WHO HAS CVI 108 00:04:21,802 --> 00:04:22,403 AND THEIR CAREGIVERS OR CARE 109 00:04:22,403 --> 00:04:22,670 PARTNERS. 110 00:04:22,670 --> 00:04:25,139 I HOPE THEY ARE INCLUDED IN 111 00:04:25,139 --> 00:04:25,573 TODAY'S DISCUSSION. 112 00:04:25,573 --> 00:04:27,841 MY NAME IS THERESA CRUZ. 113 00:04:27,841 --> 00:04:30,211 MY VISUAL DESCRIPTION IS I'M A 114 00:04:30,211 --> 00:04:32,446 MIDDLE AGED WHITE WOMAN WITH 115 00:04:32,446 --> 00:04:34,582 SHOULDER LENGTH BROWN HAIR, BLUE 116 00:04:34,582 --> 00:04:35,182 EYES. 117 00:04:35,182 --> 00:04:40,487 I'M WEARING A DOVE COLORED GRAY 118 00:04:40,487 --> 00:04:42,656 JACKET OVER A POLKA DOT PURPLE 119 00:04:42,656 --> 00:04:43,457 AND WHITE TOP. 120 00:04:43,457 --> 00:04:45,326 I HAVE THE HONOR OF DIRECTING 121 00:04:45,326 --> 00:04:47,428 THE NATIONAL CENTER FOR MEDICAL 122 00:04:47,428 --> 00:04:52,366 REHABILITATION RESEARCH AND I 123 00:04:52,366 --> 00:04:54,368 WANT TO THANK NEI FOR INVITING 124 00:04:54,368 --> 00:04:55,669 US AND PLANNING THE WORKSHOP. 125 00:04:55,669 --> 00:04:58,706 WE HAVE A FULL SCHEDULE SO I'LL 126 00:04:58,706 --> 00:05:00,741 KEEP MY REMARKS BRIEF. 127 00:05:00,741 --> 00:05:04,678 I HAVE HAD MY OWN AWARENESS 128 00:05:04,678 --> 00:05:05,446 BUILDING PROCESS WHEN IT COMES 129 00:05:05,446 --> 00:05:06,280 TO CVI. 130 00:05:06,280 --> 00:05:12,219 I DIDN'T KNOW MUCH ABOUT IT 131 00:05:12,219 --> 00:05:13,754 ABOUT FIVE YEARS AGO CHERI 132 00:05:13,754 --> 00:05:15,055 BROUGHT IT TO MY ATTENTION AND 133 00:05:15,055 --> 00:05:16,290 THERE WAS A WHOLE YEAR OF SIM 134 00:05:16,290 --> 00:05:18,993 POSE UPAND ONE WAS FOCUSSED ON 135 00:05:18,993 --> 00:05:20,828 REHAP AND SHE SAID YOU NEED TO 136 00:05:20,828 --> 00:05:23,697 COME AND I LISTEN TO CHERI. 137 00:05:23,697 --> 00:05:24,965 THAT'S SOMETHING YOU SHOULD ALL 138 00:05:24,965 --> 00:05:26,467 KNOW, YOU SHOULD LISTEN TO CHERI 139 00:05:26,467 --> 00:05:29,570 AND I WAS BLOWN AWAY BY THE 140 00:05:29,570 --> 00:05:33,340 GREAT RESEARCH IN SUPPORTING 141 00:05:33,340 --> 00:05:35,909 VISUAL REHAB AND SHE RECOMMENDED 142 00:05:35,909 --> 00:05:38,178 LOTFI AND THAT WAS MY SECOND 143 00:05:38,178 --> 00:05:40,347 OPPORTUNITY TO LISTEN TO CHERI. 144 00:05:40,347 --> 00:05:42,016 HE WAS WONDERFUL AT OUR 145 00:05:42,016 --> 00:05:44,351 CONFERENCE AND WHEN NICHD AND 146 00:05:44,351 --> 00:05:46,387 NINDS WERE WORKING ON A REBOOT 147 00:05:46,387 --> 00:05:50,024 OF OUR CEREBRAL PALSY RESEARCH 148 00:05:50,024 --> 00:05:53,560 PLAN THE FEEDBACK WE GOT FROM 149 00:05:53,560 --> 00:05:56,030 PARENTS SAYING THAT CVI IS UNDER 150 00:05:56,030 --> 00:05:56,830 DIAGNOSED IN THIS POPULATION AND 151 00:05:56,830 --> 00:05:58,699 WE NEED TO BE DOING MORE. 152 00:05:58,699 --> 00:06:00,868 THAT WAS LOUD AND CLEAR. 153 00:06:00,868 --> 00:06:03,170 AND THEN YOU'RE GOING TO HEAR 154 00:06:03,170 --> 00:06:05,506 ABOUT HOW NEI HAS TAKEN THAT UP 155 00:06:05,506 --> 00:06:07,141 IN THEIR STRATEGIC PLAN NEXT. 156 00:06:07,141 --> 00:06:10,244 SO IT'S BEEN A PLEASURE WORKING 157 00:06:10,244 --> 00:06:12,780 WITH LOTFI AND MELINDA AND TOOK 158 00:06:12,780 --> 00:06:14,281 ME A WHILE TO REALIZE MELINDA 159 00:06:14,281 --> 00:06:16,884 WAS IN CALIFORNIA AND WE WERE 160 00:06:16,884 --> 00:06:18,118 HAVING ALL THESE EARLY MORNING 161 00:06:18,118 --> 00:06:19,420 MEETINGS AND I SAID ISN'T IT 162 00:06:19,420 --> 00:06:24,525 DARK OUT AND SHE'S BEEN 163 00:06:24,525 --> 00:06:29,530 WONDERFUL AS WELL I WANT TO 164 00:06:29,530 --> 00:06:31,265 THANK YOU ALL FOR BEING HERE. 165 00:06:31,265 --> 00:06:34,268 THE OTHER GOALS OF THE WORKSHOP, 166 00:06:34,268 --> 00:06:36,570 BUILDING CENSUS AND SETTING UP 167 00:06:36,570 --> 00:06:38,605 REGISTRIES ARE REALLY HARD 168 00:06:38,605 --> 00:06:39,573 THINGS. 169 00:06:39,573 --> 00:06:44,445 I COMMEND YOU FOR COMING HERE 170 00:06:44,445 --> 00:06:46,280 AND BEING WILLING TO ROLL. 171 00:06:46,280 --> 00:06:47,581 UP YOUR SLEEVES AND DOING ALL IS 172 00:06:47,581 --> 00:06:54,121 THE HARD THINGS AND I APPRECIATE 173 00:06:54,121 --> 00:06:54,755 WHAT YOU'LL BE DOING TO HELP US 174 00:06:54,755 --> 00:06:55,155 MOVE THAT FORWARD. 175 00:06:55,155 --> 00:06:55,789 I WANT TO CLOSE BY ACKNOWLEDGING 176 00:06:55,789 --> 00:06:56,490 THE WORK THAT'S BEEN DONE BEHIND 177 00:06:56,490 --> 00:06:56,790 THE SCENES. 178 00:06:56,790 --> 00:06:59,393 WE HEARD OF SOME KEY PLAYERS BUT 179 00:06:59,393 --> 00:07:02,796 I ALSO WANT TO SAY THE 180 00:07:02,796 --> 00:07:04,598 LEADERSHIP OF NEI, THE 181 00:07:04,598 --> 00:07:06,133 LEADERSHIP OF CHILD HEALTH AND 182 00:07:06,133 --> 00:07:12,639 THE LEADERSHIP OF NINDS ARE VERY 183 00:07:12,639 --> 00:07:12,906 INVESTED. 184 00:07:12,906 --> 00:07:17,277 WITH THAT, I WILL TURN IT OVER 185 00:07:17,277 --> 00:07:22,983 TO MAKE THE DIRECTOR OF NEI, 186 00:07:22,983 --> 00:07:28,322 MICHAEL CHIANG TO COME UP. 187 00:07:28,322 --> 00:07:30,557 >> CHERI AND THERESA TO WELCOME 188 00:07:30,557 --> 00:07:35,996 YOU TO THE SECOND DAY -- 189 00:07:35,996 --> 00:07:36,997 TRANS-NIH CVI WORKSHOP. 190 00:07:36,997 --> 00:07:39,466 I'M EXCITED ABOUT THIS AND I 191 00:07:39,466 --> 00:07:41,335 WANT TO SAY A FEW WORDS ABOUT 192 00:07:41,335 --> 00:07:41,902 HOW WE GOT HERE TO BE HERE 193 00:07:41,902 --> 00:07:46,273 TODAY. 194 00:07:46,273 --> 00:07:49,009 SO WHEN I STARTED THIS POSITION 195 00:07:49,009 --> 00:07:53,747 ALMOST EXACTLY THREE YEARS AGO. 196 00:07:53,747 --> 00:07:54,381 ONE OF THE FIRST THINGS WE DID 197 00:07:54,381 --> 00:07:55,048 WAS WE DID THE NEI'S MISSION 198 00:07:55,048 --> 00:07:55,315 STATEMENT. 199 00:07:55,315 --> 00:07:56,750 THIS IS WHAT WE CAME UP WITH. 200 00:07:56,750 --> 00:07:58,685 OUR MISSION AT THE NEI IS TO 201 00:07:58,685 --> 00:08:00,053 ELIMINATE VISION LOSS AND 202 00:08:00,053 --> 00:08:01,221 IMPROVE QUALITY OF LIFE THROUGH 203 00:08:01,221 --> 00:08:01,722 VISION RESEARCH. 204 00:08:01,722 --> 00:08:03,690 AND HOW DO WE DO THAT? 205 00:08:03,690 --> 00:08:05,459 WE PROVIDE LEADERSHIP IN FOUR 206 00:08:05,459 --> 00:08:05,659 AREAS. 207 00:08:05,659 --> 00:08:07,728 NUMBER ONE, WE DRIVE INNOVATIVE 208 00:08:07,728 --> 00:08:08,095 RESEARCH. 209 00:08:08,095 --> 00:08:10,731 TWO, WE FOSTER COLLABORATIONS, 210 00:08:10,731 --> 00:08:12,933 THREE, WE RECRUIT AND INSPIRE 211 00:08:12,933 --> 00:08:23,010 AND 212 00:08:28,148 --> 00:08:30,717 ELIMINATE VISION LOSS IMPROVE 213 00:08:30,717 --> 00:08:32,286 QUALITY OF LIFE. 214 00:08:32,286 --> 00:08:35,088 IN NOVEMBER, 2021 WE PUBLISHED 215 00:08:35,088 --> 00:08:37,658 AN NEI STRATEGIC PLAN ALONG WITH 216 00:08:37,658 --> 00:08:38,292 THE MISSION STATEMENT. 217 00:08:38,292 --> 00:08:39,460 THAT LAYS OUT WHAT OUR 218 00:08:39,460 --> 00:08:41,562 PRIORITIES ARE OVER THE NEXT 219 00:08:41,562 --> 00:08:41,995 FIVE YEARS. 220 00:08:41,995 --> 00:08:43,797 AND WE STARTED TO DEVELOP A 221 00:08:43,797 --> 00:08:45,432 NUMBER OF TARGETED INITIATIVES 222 00:08:45,432 --> 00:08:47,534 TO TRY TO ACCOMPLISH GOALS OF 223 00:08:47,534 --> 00:08:48,368 THIS STRATEGIC PLAN AND IF YOU 224 00:08:48,368 --> 00:08:50,304 WANT TO TAKE A LOOK AT THE 225 00:08:50,304 --> 00:08:51,138 DETAILS IT WAS QR CODE LINKS YOU 226 00:08:51,138 --> 00:09:01,782 TO THAT. GOT A LOT OF COMMUNITY 227 00:09:13,861 --> 00:09:17,831 IT BEGAN WITH THE COMMUNITY AND 228 00:09:17,831 --> 00:09:20,734 WE ASSEMBLED EXPERT PANELS TO 229 00:09:20,734 --> 00:09:25,038 GIVE US AN OVERVIEW OF THE 230 00:09:25,038 --> 00:09:29,376 LANDSCAPE AND LOOKED CAREFULLY 231 00:09:29,376 --> 00:09:33,914 AT THIS AND CAME UP WITH A 232 00:09:33,914 --> 00:09:35,582 STRATEGIC DRAFT AND THIS TOOK 233 00:09:35,582 --> 00:09:36,984 EFFORT AND GOT PUBLIC FEEDBACK 234 00:09:36,984 --> 00:09:39,419 OND THE DRAFT AND REVISED. 235 00:09:39,419 --> 00:09:41,989 WE GOT INPUT FROM OUR NATIONAL 236 00:09:41,989 --> 00:09:43,757 ADVISORY EYE COUNCIL AND 237 00:09:43,757 --> 00:09:49,296 PUBLISHED THE PLAN IN NOVEMBER 238 00:09:49,296 --> 00:09:50,964 2021. 239 00:09:50,964 --> 00:09:53,834 WHEN WE LOOK AT THE REQUEST FOR 240 00:09:53,834 --> 00:09:56,003 INFORMATION 65% OF THE PUBLIC 241 00:09:56,003 --> 00:09:57,604 COMMENTS ADDRESSED CVI. 242 00:09:57,604 --> 00:09:58,272 THAT STRUCK US. 243 00:09:58,272 --> 00:10:01,041 THERE'S REAL GAPS IN KNOWLEDGE 244 00:10:01,041 --> 00:10:03,243 HERE AND SOME OF THOSE GAPS ARE 245 00:10:03,243 --> 00:10:06,280 SUMMARIZED ON THE SLIDE. 246 00:10:06,280 --> 00:10:09,182 NUMBER ONE, WE LACK 247 00:10:09,182 --> 00:10:10,417 EVIDENCE-BASED TOOLS AND 248 00:10:10,417 --> 00:10:13,887 GUIDELINES FOR DIAGNOSTIC OF 249 00:10:13,887 --> 00:10:14,788 DISEASE, CLASSIFICATION OF 250 00:10:14,788 --> 00:10:16,857 DISEASE. 251 00:10:16,857 --> 00:10:20,928 THERE'S A WELL THERE'S NO BIO 252 00:10:20,928 --> 00:10:21,995 MARKERS FOR TEST ASSESSMENT AND 253 00:10:21,995 --> 00:10:23,163 EVALUATION AND WE NEED 254 00:10:23,163 --> 00:10:24,665 STRATEGIES TO MEDE 255 00:10:24,665 --> 00:10:25,632 REHABILITATION NEEDS. 256 00:10:25,632 --> 00:10:28,936 WE NEED GUIDELINES FOR 257 00:10:28,936 --> 00:10:30,270 EVIDENCE-BASED REHABILITATION OF 258 00:10:30,270 --> 00:10:31,471 BRAIN-BASED VISUAL IMPAIRMENTS 259 00:10:31,471 --> 00:10:34,274 BASED ON STANDARDIZED OUTCOME 260 00:10:34,274 --> 00:10:34,942 MEASURES. 261 00:10:34,942 --> 00:10:38,045 THIS IS GOING TO REQUIRE 262 00:10:38,045 --> 00:10:41,682 INTERDISCIPLINARY APPROACHES. 263 00:10:41,682 --> 00:10:42,416 OPHTHALMOLOGISTS AND 264 00:10:42,416 --> 00:10:44,551 PEDIATRICIANS AND PEOPLE WITH 265 00:10:44,551 --> 00:10:46,954 EXPERTISE IN IMAGING, 266 00:10:46,954 --> 00:10:48,055 OCCUPATIONAL THERAPIES AND 267 00:10:48,055 --> 00:10:48,755 EDUCATORS. 268 00:10:48,755 --> 00:10:52,025 AND OVER ALL WE NEED A MUCH 269 00:10:52,025 --> 00:10:52,993 BETTER UNDERSTANDING OF THE 270 00:10:52,993 --> 00:10:54,461 NEURAL BASIS OF CVI. 271 00:10:54,461 --> 00:10:56,830 THAT'S GOING TO LEAD US TOWARDS 272 00:10:56,830 --> 00:10:59,499 A FOUNDATION FOR NEURAL 273 00:10:59,499 --> 00:11:01,768 PLASTICITY BASED THERAPIES. 274 00:11:01,768 --> 00:11:04,104 A LOT OF GAPS IB KNOWLEDGE AND 275 00:11:04,104 --> 00:11:05,272 UP PLANNING THIS WORKSHOP IT'S 276 00:11:05,272 --> 00:11:06,273 TAKEN ALMOST TWO YEARS FOR US TO 277 00:11:06,273 --> 00:11:08,842 GET HERE. 278 00:11:08,842 --> 00:11:11,144 AND THE GOALS OVER THESE TWO 279 00:11:11,144 --> 00:11:13,380 DAYS ARE NUMBER ONE TO BUILD 280 00:11:13,380 --> 00:11:13,647 AWARENESS. 281 00:11:13,647 --> 00:11:14,982 THE GOAL OF THE RESEARCH BY 282 00:11:14,982 --> 00:11:17,451 ENGAGING ADJACENT FIELDS, 283 00:11:17,451 --> 00:11:21,722 SHARING INSIGHTS AND FORGING NEW 284 00:11:21,722 --> 00:11:22,956 COLLABORATIONS IN THE SPIRIT OF 285 00:11:22,956 --> 00:11:24,958 THE NEI MISSION STATEMENT AND DO 286 00:11:24,958 --> 00:11:26,660 WE WANT TO PROMOTE CONSENSUS. 287 00:11:26,660 --> 00:11:28,028 THAT'S BEEN LACKING TO DATE. 288 00:11:28,028 --> 00:11:29,563 WE NEED TO ESTABLISH WHAT 289 00:11:29,563 --> 00:11:36,036 CRITERIA AND DIAGNOSTICS AND 290 00:11:36,036 --> 00:11:37,738 METRICS AND PARAMETERS AROUND 291 00:11:37,738 --> 00:11:39,740 DEFINITIONS TO LEAD US TOWARDS 292 00:11:39,740 --> 00:11:42,909 BEING ABLE TO DEVELOP AND 293 00:11:42,909 --> 00:11:43,777 VALIDATE EVIDENCE-BASED TEST 294 00:11:43,777 --> 00:11:45,612 BATTERIES AND INTERVENTION 295 00:11:45,612 --> 00:11:46,780 PROTOCOLS AND ONE OF THE THINGS 296 00:11:46,780 --> 00:11:49,116 WE WANT AS A TANGIBLE OUTCOME IS 297 00:11:49,116 --> 00:11:51,752 TO DEVELOP A REGISTRY THAT CAN 298 00:11:51,752 --> 00:11:54,287 BE USED TO SUPPORT RETROSPECTIVE 299 00:11:54,287 --> 00:11:55,322 AS WELL AS PROSPECTIVE RESEARCH 300 00:11:55,322 --> 00:11:55,689 STUDIES. 301 00:11:55,689 --> 00:11:58,358 SO WHAT DO WE NEED FOR THAT OVER 302 00:11:58,358 --> 00:11:59,693 THE FEW DAYS? 303 00:11:59,693 --> 00:12:01,461 WE NEED TO DETERMINE REGISTRY 304 00:12:01,461 --> 00:12:03,664 REQUIREMENTS, DATA ELEMENTS, 305 00:12:03,664 --> 00:12:04,665 INCLUSION CRITERIA, STANDARDS 306 00:12:04,665 --> 00:12:07,034 AND ALSO RESEARCH QUESTIONS THAT 307 00:12:07,034 --> 00:12:08,769 WE WANT TO ASK SO WE CAN MAKE 308 00:12:08,769 --> 00:12:10,337 SURE THE REGISTRY IS ABLE TO 309 00:12:10,337 --> 00:12:14,875 SATISFY THOSE NEEDS. 310 00:12:14,875 --> 00:12:16,710 NOW, A LOT OF PEOPLE LED US TO 311 00:12:16,710 --> 00:12:18,145 BE HERE OVER THESE FEW DAYS. 312 00:12:18,145 --> 00:12:21,081 I WANT TO THANK THE EXTERNAL 313 00:12:21,081 --> 00:12:26,586 CO-CHAIRS, DR. CHANG FROM USC 314 00:12:26,586 --> 00:12:35,295 AND DR. MERABET AND NICHD, AND 315 00:12:35,295 --> 00:12:36,229 NINDS. 316 00:12:36,229 --> 00:12:38,665 IT TAKES A TEAM AND I HAVE LOVED 317 00:12:38,665 --> 00:12:39,533 BEING ABLE TO COLLABORATE WITH 318 00:12:39,533 --> 00:12:49,910 THIS GROUP OF PEOPLE. 319 00:12:53,647 --> 00:12:55,749 FINALLY, IF YOU HAVE QUESTION WE 320 00:12:55,749 --> 00:12:57,350 WE HAVE A MAILBOX AND LOOKING 321 00:12:57,350 --> 00:12:58,518 FORWARD TO FOLLOW-UP ON WHAT WE 322 00:12:58,518 --> 00:13:01,955 ESTABLISH. 323 00:13:01,955 --> 00:13:09,663 THANK YOU VERY MUCH. 324 00:13:09,663 --> 00:13:16,336 >> GOOD MORNING. 325 00:13:16,336 --> 00:13:21,975 I'M LOTFI MERABET AND I'M I TALL 326 00:13:21,975 --> 00:13:23,710 MALE, CLEANLY SHAVEN AND WEARING 327 00:13:23,710 --> 00:13:25,212 A JACKET. 328 00:13:25,212 --> 00:13:30,517 I WANT TO THANK EVERYONE FOR 329 00:13:30,517 --> 00:13:33,653 BEING HERE I ALSO HAVE THE 330 00:13:33,653 --> 00:13:34,287 PLEASURE TO CO-CHAIR THIS 331 00:13:34,287 --> 00:13:35,188 WONDERFUL EVENT. 332 00:13:35,188 --> 00:13:38,091 I WANT TO THANK ALL THE MEMBERS 333 00:13:38,091 --> 00:13:39,960 OF THE NEI AND HAVE 334 00:13:39,960 --> 00:13:43,930 REPRESENTATION FROM THE EYE, 335 00:13:43,930 --> 00:13:45,165 BRAIN AND DEVELOPMENT AND 336 00:13:45,165 --> 00:13:47,100 UNDERSTAND HOW COMPLICATED CVI 337 00:13:47,100 --> 00:13:47,501 IS. 338 00:13:47,501 --> 00:13:49,136 THERE'S A SAYING IF YOU GIVE 339 00:13:49,136 --> 00:13:50,303 PEOPLE A VOICE EVENTUALLY 340 00:13:50,303 --> 00:13:54,274 THEY'LL BE HEARD AND THAT'S HOW 341 00:13:54,274 --> 00:13:56,910 CHANGE HAPPENS. 342 00:13:56,910 --> 00:13:58,712 TODAY IS PROOF THAT'S A TRUE 343 00:13:58,712 --> 00:13:58,979 STATEMENT. 344 00:13:58,979 --> 00:13:59,913 IT'S BEEN A LONG JOURNEY AND 345 00:13:59,913 --> 00:14:01,915 HAVE MORE TO DO BUT I THINK IT'S 346 00:14:01,915 --> 00:14:02,182 FANTASTIC. 347 00:14:02,182 --> 00:14:06,286 THANK YOU ALL FOR COMING AND 348 00:14:06,286 --> 00:14:16,797 BEING PART OF THIS. 349 00:14:16,797 --> 00:14:19,933 I'LL PASS IT TO MY COLLEAGUE 350 00:14:19,933 --> 00:14:20,600 DR. CHANG. 351 00:14:20,600 --> 00:14:23,403 >> I'M MELINDA CHANG FROM 352 00:14:23,403 --> 00:14:24,704 CHILDREN'S HOSPITAL LOS ANGELES. 353 00:14:24,704 --> 00:14:26,273 I'LL MAKE THIS SHORT. 354 00:14:26,273 --> 00:14:26,673 WELCOME EVERYONE. 355 00:14:26,673 --> 00:14:27,474 THANK YOU FOR BEING HERE. 356 00:14:27,474 --> 00:14:29,709 THIS IS A TEAM EFFORT AND WE 357 00:14:29,709 --> 00:14:30,443 APPRECIATE EVERYONE'S 358 00:14:30,443 --> 00:14:31,912 CONTRIBUTIONS AND ESPECIALLY 359 00:14:31,912 --> 00:14:34,815 THANK YOU TO THE NIH FOR HOSTING 360 00:14:34,815 --> 00:14:35,215 US. 361 00:14:35,215 --> 00:14:38,351 I FORGOT TO SAY I'M A SHORT 362 00:14:38,351 --> 00:14:41,822 ASIAN FEMALE WEARING A 363 00:14:41,822 --> 00:14:43,390 CREAM-COLORED COAT AND WE'LL 364 00:14:43,390 --> 00:14:44,825 SUMMARIZE YESTERDAY'S WORKSHOP 365 00:14:44,825 --> 00:14:45,225 MEETING. 366 00:14:45,225 --> 00:14:46,893 I DIDN'T HAVE TIME TO BEAUTIFY 367 00:14:46,893 --> 00:14:49,262 THIS BECAUSE WE DID THIS AT 368 00:14:49,262 --> 00:14:51,131 11:00 P.M. YESTERDAY AND MOST 369 00:14:51,131 --> 00:14:53,066 THE SLIDES ARE FROM THE 370 00:14:53,066 --> 00:14:54,000 PRESENTATION DECK FROM THE 371 00:14:54,000 --> 00:14:55,602 PEOPLE OF YESTERDAY SO WE DIDN'T 372 00:14:55,602 --> 00:14:59,439 ACTUALLY MAKE MOST THE SLIDES. 373 00:14:59,439 --> 00:15:00,907 HERE'S SOME TAKE HOME MESSAGES 374 00:15:00,907 --> 00:15:01,641 PRESENTATION BY PRESENTATION. 375 00:15:01,641 --> 00:15:06,813 WE HAD A PRESENTATION BY 376 00:15:06,813 --> 00:15:13,520 DR. SKIP REG AND CVI REQUIRES 377 00:15:13,520 --> 00:15:14,120 MULTI-DISCIPLINARY CARE AND 378 00:15:14,120 --> 00:15:15,288 THERE'S ALL THESE DIFFERENT 379 00:15:15,288 --> 00:15:19,960 SPECIALTIES WHICH ARE INVOLVED 380 00:15:19,960 --> 00:15:25,832 AND WE ALL SEE A PIECE OF THE 381 00:15:25,832 --> 00:15:28,568 ELEPHANT AND GET A FULLER 382 00:15:28,568 --> 00:15:29,669 CENTERING OF THE CVI ELEPHANT 383 00:15:29,669 --> 00:15:31,338 AND USE THIS TO HELP US WITH THE 384 00:15:31,338 --> 00:15:36,276 FAMILIES WHO ARE AFFECTED. 385 00:15:36,276 --> 00:15:39,412 AND THERE WERE TALK ABOUT THE 386 00:15:39,412 --> 00:15:43,316 IDEOLOGIES CAN CAUSE CVI AND 387 00:15:43,316 --> 00:15:46,186 IT'S HETEROGENOUS AND THERE'S 388 00:15:46,186 --> 00:15:50,824 FUNCTIONAL VISION AND AGE OF ON 389 00:15:50,824 --> 00:15:52,425 SET AND WE WANT TO BE ABLE TO 390 00:15:52,425 --> 00:15:55,462 CAPTURE THIS IN THE REGISTRY. 391 00:15:55,462 --> 00:15:57,631 WE KNOW HOW WE MIGHT BE ABLE TO 392 00:15:57,631 --> 00:15:59,799 DO INDIVIDUALIZED OR 393 00:15:59,799 --> 00:16:01,034 PERSONALIZED MEDICINE FOR 394 00:16:01,034 --> 00:16:02,202 PATIENTS IN THE FUTURE. 395 00:16:02,202 --> 00:16:03,737 WE TALKED ABOUT MORE TECHNICAL 396 00:16:03,737 --> 00:16:07,941 DETAILS AND DISORDERS OF OCULAR 397 00:16:07,941 --> 00:16:10,010 MOTILITY ALONE ARE DISTINCT FROM 398 00:16:10,010 --> 00:16:13,513 CVI THOUGH INDIVIDUALS WITH CVI 399 00:16:13,513 --> 00:16:16,783 FREQUENTLY HAVE OCULAR 400 00:16:16,783 --> 00:16:18,251 DYSMOTILITY AND IS CONSIDERED TO 401 00:16:18,251 --> 00:16:19,152 HAVE CVI. 402 00:16:19,152 --> 00:16:21,454 AND WE TALKED ABOUT SOMETHING 403 00:16:21,454 --> 00:16:22,289 THAT HAS BEEN CONTROVERSIAL IN 404 00:16:22,289 --> 00:16:24,658 THE PAST WE ALL AGREED CERTAIN 405 00:16:24,658 --> 00:16:30,263 TYPES OF SEIZURES THOSE THAT 406 00:16:30,263 --> 00:16:31,464 CAUSE ENCEPHALOPATHY MAY BE A 407 00:16:31,464 --> 00:16:34,267 CAUSE CVI. 408 00:16:34,267 --> 00:16:42,275 WE HAD A PRESENTATION ABOUT 409 00:16:42,275 --> 00:16:46,413 TELULA ACUITY. 410 00:16:46,413 --> 00:16:51,618 THERE'S A BLACK AND WHITE 411 00:16:51,618 --> 00:16:55,055 GRADING WITH PRESENTED ON THE 412 00:16:55,055 --> 00:16:55,355 BACKGROUND. 413 00:16:55,355 --> 00:16:57,157 THIS THE CHILD IS ABLE TO 414 00:16:57,157 --> 00:16:59,659 RESOLVE THE FREQUENCY OF THE 415 00:16:59,659 --> 00:17:00,660 GRADING THEY'LL LOOK 416 00:17:00,660 --> 00:17:01,294 PREFERENTIALLY TOWARDS THE SIDE 417 00:17:01,294 --> 00:17:07,801 OF THE GRADING. 418 00:17:07,801 --> 00:17:10,270 ON THE RIGHT THE EXAMINER 419 00:17:10,270 --> 00:17:13,540 PRESENTS THE CARD AND INCREASES 420 00:17:13,540 --> 00:17:17,210 FREQUENCIES UNTIL THEY NO LONGER 421 00:17:17,210 --> 00:17:17,978 PREFERENTIALLY LOOK TO THE SIDE 422 00:17:17,978 --> 00:17:21,081 OF THE GRADING. 423 00:17:21,081 --> 00:17:23,883 ANOTHER WAY IS SOMETHING CALLED 424 00:17:23,883 --> 00:17:24,718 VISUAL POTENTIAL. 425 00:17:24,718 --> 00:17:28,054 SORRY IT'S A BIT BLURRY BUT THE 426 00:17:28,054 --> 00:17:30,390 CHILD HAS THIS SIMILAR TO EEG 427 00:17:30,390 --> 00:17:33,960 BUT FEWER ELECTRODES ON THE 428 00:17:33,960 --> 00:17:35,395 OCCIPITAL LOBE AND LOOK AT THE 429 00:17:35,395 --> 00:17:36,997 STIMULUS WHICH COULD BE A 430 00:17:36,997 --> 00:17:39,899 CHECKER BOARD OR GRADING PATTERN 431 00:17:39,899 --> 00:17:40,567 AND MEASURING THE BRAIN RESPONSE 432 00:17:40,567 --> 00:17:41,901 TO THE VISUAL STIMULUS YOU CAN 433 00:17:41,901 --> 00:17:44,871 GET AN ESTIMATE OF THEIR VISUAL 434 00:17:44,871 --> 00:17:45,138 ACUITY. 435 00:17:45,138 --> 00:17:50,176 WE TALKED HOW THE TELLER AND EC 436 00:17:50,176 --> 00:17:52,445 WAN DETERMINE THIS AT CVI BUT 437 00:17:52,445 --> 00:17:54,280 NOT SUITABLE TO ALL AFFECTED 438 00:17:54,280 --> 00:17:58,852 INDIVIDUALS DEPENDING ON AGE AND 439 00:17:58,852 --> 00:17:59,152 COOPERATION. 440 00:17:59,152 --> 00:18:03,189 ONE THING WAS GRADING ACUITY 441 00:18:03,189 --> 00:18:04,324 ASSESSED IS CONSISTENTLY BETTER 442 00:18:04,324 --> 00:18:06,926 THAN TELLER ACUITY AND THAT'S 443 00:18:06,926 --> 00:18:08,294 WHAT THE GRAPH SHOWS ON THE X 444 00:18:08,294 --> 00:18:11,998 AXIS IS THE PREFERENTIAL LOOKING 445 00:18:11,998 --> 00:18:17,737 ACUITY AND ON THE Y AXIS THE 446 00:18:17,737 --> 00:18:18,772 SWEEP ACUITY. 447 00:18:18,772 --> 00:18:20,273 THIS IS THE LINE OF PERFECT 448 00:18:20,273 --> 00:18:20,573 CORRELATION. 449 00:18:20,573 --> 00:18:21,875 IF THEY WERE MEASURING THE SAME 450 00:18:21,875 --> 00:18:23,309 THING ALL THE DOTS WOULD BE ON 451 00:18:23,309 --> 00:18:25,278 THE LINE BUT ALL THE DOTS ARE 452 00:18:25,278 --> 00:18:27,180 ABOVE THE LINE INDICATING FOR 453 00:18:27,180 --> 00:18:29,682 THE SAME TELLER ACUITY THE SWEEP 454 00:18:29,682 --> 00:18:34,187 ACUITY IS IS HIGHER TO THERE'S A 455 00:18:34,187 --> 00:18:35,588 DISCREPANCY IN THE TYPICALLY 456 00:18:35,588 --> 00:18:36,956 DEVELOPING CHILDREN AND THE 457 00:18:36,956 --> 00:18:37,924 DIFFERENCE USUALLY NARROWS OVER 458 00:18:37,924 --> 00:18:39,426 TIME AND THAT WAS NOT SEEN IN 459 00:18:39,426 --> 00:18:40,627 KIDS WITH CVI. 460 00:18:40,627 --> 00:18:42,328 THERE WAS A THOUGHT THIS IS 461 00:18:42,328 --> 00:18:45,632 POTENTIALLY A BIOMARKER FOR CVI. 462 00:18:45,632 --> 00:18:47,634 AND MY PRESENTATION WAS ON EYE 463 00:18:47,634 --> 00:18:48,668 TRACKING AND FUNCTIONAL VISION 464 00:18:48,668 --> 00:18:51,071 ASSESSMENT AND KIDS WITH CVI AND 465 00:18:51,071 --> 00:18:53,573 HERE'S A SCHEMATIC OF THE THREE 466 00:18:53,573 --> 00:18:57,610 DIFFERENT EYE TRACKING LABS IN 467 00:18:57,610 --> 00:18:57,944 THE U.S. 468 00:18:57,944 --> 00:19:01,181 WE'RE USING THIS TO STUDY LOWER 469 00:19:01,181 --> 00:19:03,116 ORDER VISUAL AND HIGHER ORDER 470 00:19:03,116 --> 00:19:04,484 PROCESSING AND OCULAR MOTILITY 471 00:19:04,484 --> 00:19:06,953 AND ALL OF US ARE STUDYING ALL 472 00:19:06,953 --> 00:19:09,389 THESE THINGS IN TERMS OF OUR 473 00:19:09,389 --> 00:19:11,124 PUBLICATIONS WE PRIMARILY WE 474 00:19:11,124 --> 00:19:14,360 PUBLISHED HOW WE'VE USED EYE 475 00:19:14,360 --> 00:19:16,096 TRACKING TO ASSESS LOWER ORDER 476 00:19:16,096 --> 00:19:18,264 VISUAL ACUITY SUCH AS WITH 477 00:19:18,264 --> 00:19:18,465 CARDS. 478 00:19:18,465 --> 00:19:20,967 WE'VE LOOKED AT EYE TRACKING TO 479 00:19:20,967 --> 00:19:23,536 ASSESS VISUAL SEARCH OR 480 00:19:23,536 --> 00:19:24,904 HIGH-ORDER VISUAL PROCESSING AND 481 00:19:24,904 --> 00:19:31,411 YOU'LL HEAR MORE LATER ON TODAY. 482 00:19:31,411 --> 00:19:34,080 AND THEY'RE LOOKING AT KIDS WHO 483 00:19:34,080 --> 00:19:35,315 HAVE HAD BRAIN INJURY. 484 00:19:35,315 --> 00:19:37,951 HERE'S JUST AN EXAMPLE OF HOW WE 485 00:19:37,951 --> 00:19:39,919 USE EYE TRACKING TO ASSESS 486 00:19:39,919 --> 00:19:41,421 ACUITY IN KIDS WITH CVI. 487 00:19:41,421 --> 00:19:45,158 THIS IS SIMILAR TO A TELLER 488 00:19:45,158 --> 00:19:48,428 ACUITY AND THE BLACK AND WHITE 489 00:19:48,428 --> 00:19:49,863 BACKGROUND AND LOOK TO SEE IF 490 00:19:49,863 --> 00:19:51,431 THE KIDS ARE LOOKING TOWARDS THE 491 00:19:51,431 --> 00:19:55,802 GRADING AND THE RED IS WHERE THE 492 00:19:55,802 --> 00:19:57,937 FIXATIONS ARE LONGER AND GREATER 493 00:19:57,937 --> 00:19:59,506 THAN 50% WERE WITHIN THE AREA OF 494 00:19:59,506 --> 00:20:01,040 THE GRADING THEN THAT GRADING 495 00:20:01,040 --> 00:20:02,242 WAS CONSIDERED TO BE SEEN. 496 00:20:02,242 --> 00:20:04,077 ON THE LEFT IS GRADING SEEN AND 497 00:20:04,077 --> 00:20:05,845 ON THE RIGHT IS GRADING NOT SEEN 498 00:20:05,845 --> 00:20:07,647 BECAUSE LESS THAN 50% OF THE 499 00:20:07,647 --> 00:20:08,281 FIXATIONS WERE WITHIN THE AREA 500 00:20:08,281 --> 00:20:13,253 OF THE GRADING. 501 00:20:13,253 --> 00:20:15,321 HERE'S ANOTHER EYE TRACKING FOR 502 00:20:15,321 --> 00:20:16,656 CLASSIFICATION OF CVI. 503 00:20:16,656 --> 00:20:18,291 HERE WE LOOKED AT CHILDREN WITH 504 00:20:18,291 --> 00:20:19,959 CVI AS WELL AS CONTROLS AND 505 00:20:19,959 --> 00:20:22,328 LOOKED AT THE OCULAR PARAMETERS 506 00:20:22,328 --> 00:20:25,765 WE CAN EXPORT FROM THE EYE 507 00:20:25,765 --> 00:20:29,202 TRACKING SOFTWARE LIKE FIXATION 508 00:20:29,202 --> 00:20:30,270 LATENCY AND FREQUENCY OF 509 00:20:30,270 --> 00:20:31,671 VELOCITY AND AMPLITUDE AND FROM 510 00:20:31,671 --> 00:20:34,707 THE PARAMETERS THE ONES MOST 511 00:20:34,707 --> 00:20:36,342 DISCRIMINATIVE WERE FIXATION 512 00:20:36,342 --> 00:20:37,110 LATENCY AND FREQUENCY. 513 00:20:37,110 --> 00:20:43,216 SO IF WE LOOK ON THE GRAPH 514 00:20:43,216 --> 00:20:47,086 LATENCY ON THE X AND FREQUENCY 515 00:20:47,086 --> 00:20:49,722 ON THE Y AND YOU CAN SEE THERE'S 516 00:20:49,722 --> 00:20:51,191 ALMOST NO OVERLAP BETWEEN THE 517 00:20:51,191 --> 00:20:55,228 TWO GROUPS AND IF WE SET THE 518 00:20:55,228 --> 00:20:57,063 THRESHOLD OF LATENCY AND 519 00:20:57,063 --> 00:21:02,902 FIXATION AT 5.3 FIXATIONS PER 520 00:21:02,902 --> 00:21:04,370 TRIAL WE'RE ABLE TO CLASSIFY 521 00:21:04,370 --> 00:21:07,807 WITH HIGH ACCURACY OF 94%. 522 00:21:07,807 --> 00:21:10,777 I DIDN'T TALK TOO MUCH ABOUT 523 00:21:10,777 --> 00:21:11,811 FUNCTIONAL VISUAL ASSESSMENTS 524 00:21:11,811 --> 00:21:12,812 BECAUSE WE'LL HEAR ABOUT IT 525 00:21:12,812 --> 00:21:16,816 TODAY AND WE'RE DOING A STUDY 526 00:21:16,816 --> 00:21:21,754 VALIDATING THE CVI RANGE CR OR 527 00:21:21,754 --> 00:21:23,423 FOR CLINICAL RESEARCH PERFORMED 528 00:21:23,423 --> 00:21:25,458 IN PERSON BY A NEURAL 529 00:21:25,458 --> 00:21:27,260 PSYCHOLOGIST AND GRADED AND 530 00:21:27,260 --> 00:21:30,263 WE'RE LOOKING AT THE RELIABILITY 531 00:21:30,263 --> 00:21:33,833 AND LONGITUDINAL CHANGE OVER ONE 532 00:21:33,833 --> 00:21:34,033 YEAR. 533 00:21:34,033 --> 00:21:36,869 NEXT WE HEARD ABOUT FUNCTIONAL 534 00:21:36,869 --> 00:21:40,440 QUESTIONNAIRES AND INVENTORIES 535 00:21:40,440 --> 00:21:46,246 AND THE ADAPTATION OF THE DUTTON 536 00:21:46,246 --> 00:21:48,615 INVENTORY AND HE'S PUT THESE QR 537 00:21:48,615 --> 00:21:49,983 CODES IF ANYONE WANTS TO TAKE A 538 00:21:49,983 --> 00:21:52,352 LOOK AT THE DEMOS THEY'RE 539 00:21:52,352 --> 00:21:55,722 WELCOME TO DO SO. 540 00:21:55,722 --> 00:21:58,324 IT'S A VERSION OF THE HVFQI ON 541 00:21:58,324 --> 00:22:01,961 THE WEB-PLACED PLATFORMS TO LET 542 00:22:01,961 --> 00:22:05,698 THE EXAMINER KNOW WHETHER THEY 543 00:22:05,698 --> 00:22:07,700 HAVE QUESTION. 544 00:22:07,700 --> 00:22:09,535 THERE'S INVENTORY FOR 0 TO 3 AND 545 00:22:09,535 --> 00:22:13,172 4 TO 18 AND ADULTS AND WORKING 546 00:22:13,172 --> 00:22:15,041 ON SHORTER ONES. 547 00:22:15,041 --> 00:22:18,544 A REPORT IS PROVIDED INCLUDING 548 00:22:18,544 --> 00:22:21,614 PERSONALIZED STRATEGIIES BASED N 549 00:22:21,614 --> 00:22:22,181 RESPONSES FROM PARENTS AND 550 00:22:22,181 --> 00:22:22,882 SELF-ADMINISTRATION LINK AND YOU 551 00:22:22,882 --> 00:22:27,287 CAN SEND AN E-MAIL TO THE FAMILY 552 00:22:27,287 --> 00:22:29,422 AND THEY'LL BE WORK ON THAT AT 553 00:22:29,422 --> 00:22:32,659 HOME AND THERE'S A SCREENING 554 00:22:32,659 --> 00:22:32,925 INVENTORY. 555 00:22:32,925 --> 00:22:35,261 THERE'S A BUILT ANALYTICS 556 00:22:35,261 --> 00:22:37,297 PLATFORM AND IT'S USED IN 557 00:22:37,297 --> 00:22:38,698 LONGITUDINAL STUDIES AND 558 00:22:38,698 --> 00:22:40,166 MULTI-CENTER STUDIES AND 559 00:22:40,166 --> 00:22:40,733 CLINICAL AND DIAGNOSTIC AND 560 00:22:40,733 --> 00:22:43,670 SCREENING TOOL. 561 00:22:43,670 --> 00:22:46,139 >> SOME MAY KNOW WE HAD A PAPER 562 00:22:46,139 --> 00:22:51,177 BACK IN 2021 SHOWING THE HFQI 563 00:22:51,177 --> 00:22:54,113 WITH CHILDREN WITH GOOD VISUAL 564 00:22:54,113 --> 00:22:55,948 ACUITY AND SHOWED US CHILDREN 565 00:22:55,948 --> 00:22:58,284 WHO HAD BOTH GOOD AND LOWER 566 00:22:58,284 --> 00:23:00,520 VISUAL ACUITY. 567 00:23:00,520 --> 00:23:03,856 IN THE GRAPH IN BLUE ON THE LEFT 568 00:23:03,856 --> 00:23:06,626 IS THE NEURO TYPICAL OR TYPICAL 569 00:23:06,626 --> 00:23:08,328 DEVELOPING CONTROL AND THE 570 00:23:08,328 --> 00:23:09,796 SPECTRUM INDEX IS LOWER THAN ALL 571 00:23:09,796 --> 00:23:10,663 THE OTHER CVI GROUPS. 572 00:23:10,663 --> 00:23:13,599 THE CVI GROUPS ARE IN ORANGE. 573 00:23:13,599 --> 00:23:15,735 THE DARK ORANGE SHOWS ALL THE 574 00:23:15,735 --> 00:23:17,470 CVI PATIENTS GROUPED TOGETHER. 575 00:23:17,470 --> 00:23:19,005 THE LIGHTER ORANGE IS THE 576 00:23:19,005 --> 00:23:20,540 PATIENTS WITH NEAR NORMAL ACUITY 577 00:23:20,540 --> 00:23:24,177 THE 2021 PAPER AND THE MIDDLE 578 00:23:24,177 --> 00:23:26,646 ORANGE IS THE CVI WITH LOW 579 00:23:26,646 --> 00:23:29,115 VISUAL ACUITY AND INTERESTING NO 580 00:23:29,115 --> 00:23:39,625 DIFFERENCE IN THE HVFD SCORES. 581 00:23:40,126 --> 00:23:42,095 AND THEN WE WERE TOLD ABOUT CVI 582 00:23:42,095 --> 00:23:43,930 AND THE OPTIC NERVE. 583 00:23:43,930 --> 00:23:45,698 WE TALKED ABOUT THE VARIOUS 584 00:23:45,698 --> 00:23:47,400 OPTIC NERVE COMORBIDITIES THAT 585 00:23:47,400 --> 00:23:48,835 CAN OCCUR IN PATIENTS WITH CVI. 586 00:23:48,835 --> 00:23:50,036 THESE ARE TWO OF THE EXAMPLES. 587 00:23:50,036 --> 00:23:55,441 ON THE LEFT IS A PATIENT WITH 588 00:23:55,441 --> 00:23:57,276 HYPOPLASIA WHERE THE NERVE IS 589 00:23:57,276 --> 00:24:01,614 SMALLER AND THE OTHER HAS OPTIC 590 00:24:01,614 --> 00:24:03,683 NERVE CUPPING AND THEY HAVE CP. 591 00:24:03,683 --> 00:24:06,986 HERE THE OPTIC NERVE IS A LITTLE 592 00:24:06,986 --> 00:24:09,088 BIT MORE PALE AND THE OPTIC 593 00:24:09,088 --> 00:24:14,227 NERVE CUP IS ENLARGED. 594 00:24:14,227 --> 00:24:16,829 THERE ARE NO OCULAR 595 00:24:16,829 --> 00:24:18,664 COMORBIDITIES BUT WE FOUND 40% 596 00:24:18,664 --> 00:24:20,566 OF PATIENT HAVE OCULAR 597 00:24:20,566 --> 00:24:21,667 COMORBIDITIES SO IN OUR 598 00:24:21,667 --> 00:24:22,668 DIAGNOSTIC CRITERIA WE NEED TO 599 00:24:22,668 --> 00:24:24,937 ACCOUNT FOR THESE OCULAR COS 600 00:24:24,937 --> 00:24:30,276 ESPECIALLY OPTIC NERVE PROBLEMS. 601 00:24:30,276 --> 00:24:34,046 WE TALKED ABOUT HOW THEY 602 00:24:34,046 --> 00:24:36,082 DIAGNOSE CVI AND IT'S 603 00:24:36,082 --> 00:24:37,617 INSUFFICIENT TO CAUSE THE 604 00:24:37,617 --> 00:24:38,885 SEVERITY OF THE IMPAIRMENT AND 605 00:24:38,885 --> 00:24:42,755 WE HAVE TO LOOK AT THE OPTIC 606 00:24:42,755 --> 00:24:44,257 NERVE AND DETERMINE HOW SEVERE 607 00:24:44,257 --> 00:24:48,428 THE OPTIC ATROPHY IS AND IF IT'S 608 00:24:48,428 --> 00:24:49,762 WORSE WE CONSIDER THERE MAY BE 609 00:24:49,762 --> 00:24:54,267 CVI ON TOP OF THE OPTIC ATROPHY. 610 00:24:54,267 --> 00:24:55,501 . 611 00:24:55,501 --> 00:24:57,904 AS AN EXAMPLE OPTIC ATROPHY WITH 612 00:24:57,904 --> 00:25:00,673 NORMALLY ACTIVE PUPILS WERE NOT 613 00:25:00,673 --> 00:25:02,775 DESCRIBED BECAUSE IF IT'S SEVERE 614 00:25:02,775 --> 00:25:05,511 ENOUGH TO CAUSE LIGHT PERCEPTION 615 00:25:05,511 --> 00:25:08,648 THE INDIVIDUALS WOULD NOT BE 616 00:25:08,648 --> 00:25:10,116 EXPECTED TO REACT WELL AND THOSE 617 00:25:10,116 --> 00:25:14,987 WHO HAVE THIS ALSO HAVE OPTIC 618 00:25:14,987 --> 00:25:15,221 ATROPHY. 619 00:25:15,221 --> 00:25:17,290 NEXT WE TALKED ABOUT CVI AND 620 00:25:17,290 --> 00:25:19,225 RETINAL DISORDERS. 621 00:25:19,225 --> 00:25:20,359 WE TALKED ABOUT THE DISTINCTION 622 00:25:20,359 --> 00:25:22,328 BETWEEN RETINAL AND VISION LOSS 623 00:25:22,328 --> 00:25:24,964 IS AN ARTIFICIAL DICHOTOMY 624 00:25:24,964 --> 00:25:26,833 BECAUSE THE RETINAL IS RARELY 625 00:25:26,833 --> 00:25:28,601 THE VISUAL PORTION WE CAN SEE 626 00:25:28,601 --> 00:25:30,536 BUT WE TALKED ABOUT HAVING THE 627 00:25:30,536 --> 00:25:33,072 TWO TOGETHER COULD HELP OR 628 00:25:33,072 --> 00:25:34,874 HINDER ACCURATE DIAGNOSIS. 629 00:25:34,874 --> 00:25:37,944 SOMETIMES THE CONSTELLATION OF 630 00:25:37,944 --> 00:25:46,285 FEATURES WHERE YOU HAVE THE R 631 00:25:46,285 --> 00:25:47,320 RETR 632 00:25:47,320 --> 00:25:51,624 RETINOPATHY AND IT CAN BE 633 00:25:51,624 --> 00:25:52,558 DIFFICULT TO DISTINGUISH FROM 634 00:25:52,558 --> 00:25:54,427 THE CVI AND CAN BE DIFFICULT TO 635 00:25:54,427 --> 00:25:56,195 DIFFERENTIATE THE TWO DIAGNOSES. 636 00:25:56,195 --> 00:25:57,897 WE TALKED HOW IT'S IMPORTANT TO 637 00:25:57,897 --> 00:26:01,300 ACCOUNT FOR SECONDARY EFFECTS OF 638 00:26:01,300 --> 00:26:02,935 TREATMENT SUFFICIENT AS 639 00:26:02,935 --> 00:26:06,272 RADIATION OR MEDICATION OR 640 00:26:06,272 --> 00:26:10,843 DECREASED COGNATION MAKING IT 641 00:26:10,843 --> 00:26:12,411 DIFFICULT TO PARTICIPATE. 642 00:26:12,411 --> 00:26:15,281 AND NEXT WE TALKED ABOUT 643 00:26:15,281 --> 00:26:18,017 REFLECTIVE ERROR LIKE A GLASSES 644 00:26:18,017 --> 00:26:18,351 PRESCRIPTION. 645 00:26:18,351 --> 00:26:21,721 WE TALKED ABOUT HOW THE 646 00:26:21,721 --> 00:26:25,324 PREVALENCE OF REFRACTIVE ERROR 647 00:26:25,324 --> 00:26:29,462 ARE HIGHER IN CHILDREN WITH CVI. 648 00:26:29,462 --> 00:26:33,099 THE AMERICAN ACADEMY OF 649 00:26:33,099 --> 00:26:34,534 OPHTHALMOLOGY HAVE GUIDELINES 650 00:26:34,534 --> 00:26:38,771 FOR WHEN REFRACTIVE ERRORS ARE 651 00:26:38,771 --> 00:26:39,805 CONSIDERED SIGNIFICANT AND 652 00:26:39,805 --> 00:26:41,541 THERE'S NO SPECIFIC GUIDELINES 653 00:26:41,541 --> 00:26:45,144 FOR CHILDREN WITH CVI AND THINK 654 00:26:45,144 --> 00:26:46,412 THEY MAY HAVE DIFFERENCES 655 00:26:46,412 --> 00:26:47,280 REQUIREMENTS BECAUSE THEY MAY 656 00:26:47,280 --> 00:26:49,949 HAVE DIFFERENT ABILITIES TO 657 00:26:49,949 --> 00:26:52,718 ACCOMMODATE OR TO SEE NEAR 658 00:26:52,718 --> 00:26:52,952 VISION. 659 00:26:52,952 --> 00:26:54,921 THIS IS IMPORTANT BECAUSE 660 00:26:54,921 --> 00:26:57,690 INCORRECTED REFRACTIVE ERROR 661 00:26:57,690 --> 00:26:59,225 DIMINISHES THE QUALITY OF VISION 662 00:26:59,225 --> 00:27:01,961 AND CORRECTION IN REFRACTIVE 663 00:27:01,961 --> 00:27:07,166 ERROR AND VISUAL REHABILITATION 664 00:27:07,166 --> 00:27:07,967 AND DENYING OR DELAYING 665 00:27:07,967 --> 00:27:08,434 CORRECTION MAY CAUSE 666 00:27:08,434 --> 00:27:11,370 OVERDEVELOPMENT. 667 00:27:11,370 --> 00:27:14,840 I'LL TURN IT OVER TO MY 668 00:27:14,840 --> 00:27:15,107 CO-CHAIR. 669 00:27:15,107 --> 00:27:18,277 >> THANK YOU. 670 00:27:18,277 --> 00:27:20,947 WAIT, THERE'S MORE. 671 00:27:20,947 --> 00:27:22,648 WE KNOW CVI IS COMPLEX AND WE 672 00:27:22,648 --> 00:27:24,083 HAVE OTHER CONSIDERATIONS TO 673 00:27:24,083 --> 00:27:25,618 THINK ABOUT. 674 00:27:25,618 --> 00:27:28,321 WE HAD DR. SHAH SPEAKING TO US 675 00:27:28,321 --> 00:27:30,256 ABOUT THE NEUROLOGICAL 676 00:27:30,256 --> 00:27:31,924 COMORBIDITIES ASSOCIATED WITH 677 00:27:31,924 --> 00:27:32,391 CVI. 678 00:27:32,391 --> 00:27:33,759 HUMAN VISUAL DEVELOPMENT SHOWS 679 00:27:33,759 --> 00:27:36,462 US HOW TIMING IS VERY IMPORTANT. 680 00:27:36,462 --> 00:27:43,369 THE EARLY STAGES WE THINK OF 681 00:27:43,369 --> 00:27:44,704 POSTURE CONTROL AND DIFFERENT 682 00:27:44,704 --> 00:27:46,672 ASPECTS OF VISION AND HOW THAT 683 00:27:46,672 --> 00:27:48,207 INFLUENCES OTHER HIGHER FORMS OF 684 00:27:48,207 --> 00:27:48,941 PROCESSING AS WELL. 685 00:27:48,941 --> 00:27:50,376 THIS DRIVES HOME THE IMPORTANCE 686 00:27:50,376 --> 00:27:52,979 OF TIMING AND UNDERSTANDING 687 00:27:52,979 --> 00:27:55,948 WHERE THAT INSULT OR INJURY OR 688 00:27:55,948 --> 00:27:57,316 MALDEVELOPMENT OCCURS HAS AFTER 689 00:27:57,316 --> 00:27:58,284 THAT SEQUELAE WE SHOULD 690 00:27:58,284 --> 00:27:58,551 CONSIDER. 691 00:27:58,551 --> 00:28:02,722 TIMING IS AN IMPORTANT ASPECT. 692 00:28:02,722 --> 00:28:03,990 WE TALKED ABOUT THE DIAGNOSTIC 693 00:28:03,990 --> 00:28:06,092 DILEMMA THERE'S A PRESENTATION 694 00:28:06,092 --> 00:28:11,631 OFTEN OF CVI WITH OTHER NEURO 695 00:28:11,631 --> 00:28:12,798 DEVELOPMENTS LIKE AUTISM 696 00:28:12,798 --> 00:28:14,900 DISORDER AND WE SAW THEM AS 697 00:28:14,900 --> 00:28:17,036 INDEPENDENT BUT POTENTIAL 698 00:28:17,036 --> 00:28:17,903 OVERLAP. 699 00:28:17,903 --> 00:28:19,672 THERE'S BOUNDARIES WE NEED TO BE 700 00:28:19,672 --> 00:28:21,140 ABLE TO QUANTIFY AND SEE WHAT IT 701 00:28:21,140 --> 00:28:25,144 IS AND PRIORITIZE THE PRIMARY 702 00:28:25,144 --> 00:28:26,145 DRIVERS FOR THAT PARTICULAR 703 00:28:26,145 --> 00:28:30,282 INDIVIDUAL WHICH IS A BIG 704 00:28:30,282 --> 00:28:31,584 CHALLENGE WE RECOGNIZE. 705 00:28:31,584 --> 00:28:33,619 WITH DISCUSSED ADULTS WITH CVI 706 00:28:33,619 --> 00:28:37,957 AND THE IMPORTANCE OF 707 00:28:37,957 --> 00:28:38,791 MULTI-DISCIPLINARY CARE. 708 00:28:38,791 --> 00:28:40,326 SHARED WITH US THE STATISTIC 709 00:28:40,326 --> 00:28:43,195 MOST CHILDREN DO NOT RECEIVE 710 00:28:43,195 --> 00:28:43,963 ADEQUATE TRANSITION PLANNING AND 711 00:28:43,963 --> 00:28:45,731 AGE OUT AND WHAT CAN WE DO FOR 712 00:28:45,731 --> 00:28:48,768 THEM AS THEY BECOME ADULTS AND 713 00:28:48,768 --> 00:28:54,273 CHILDREN WITH DEVELOPMENT DELAY 714 00:28:54,273 --> 00:28:58,277 ARE 20% LESS LIKELY TO RECEIVE 715 00:28:58,277 --> 00:28:59,612 TRANSITION PLANNING AND HAVE TO 716 00:28:59,612 --> 00:29:00,246 MAKE SURE THEY DON'T FALL 717 00:29:00,246 --> 00:29:03,416 THROUGH THE GAP. 718 00:29:03,416 --> 00:29:06,986 THERE'S LITTLE RESEARCH IN TERMS 719 00:29:06,986 --> 00:29:08,988 OF SUPPLYING THE TRANSITION AND 720 00:29:08,988 --> 00:29:10,790 THE GREAT RECOMMENDATION IS TO 721 00:29:10,790 --> 00:29:12,258 BEGIN EARLY AND ESTABLISH CARE 722 00:29:12,258 --> 00:29:14,260 FROM THE ADULT PROVIDER PRIOR TO 723 00:29:14,260 --> 00:29:16,062 STOPPING CARE FROM THE PEDIATRIC 724 00:29:16,062 --> 00:29:16,295 DRIVER. 725 00:29:16,295 --> 00:29:17,196 DRIVING HOME THE IDEA THE 726 00:29:17,196 --> 00:29:19,498 COMMUNICATION AND HANDOFF HAS TO 727 00:29:19,498 --> 00:29:28,674 STAY SALIENT AND ROBUST. 728 00:29:28,674 --> 00:29:30,276 MEDICAL NECESSITY IS IMPORTANT. 729 00:29:30,276 --> 00:29:32,011 IT TAKES A DEFINITION WHICH IS 730 00:29:32,011 --> 00:29:33,612 WHY WE WERE IN THE ROOM 731 00:29:33,612 --> 00:29:33,879 YESTERDAY. 732 00:29:33,879 --> 00:29:36,916 SECOND IS DEMONSTRATION OF THE 733 00:29:36,916 --> 00:29:40,419 IMPACT OF CORTICAL VISUAL 734 00:29:40,419 --> 00:29:41,387 IMPAIRMENT AND WE HAVE TO 735 00:29:41,387 --> 00:29:42,888 UNDERSTAND THE DEFINITION AND 736 00:29:42,888 --> 00:29:45,224 ESTABLISH IT AND HAVE TO 737 00:29:45,224 --> 00:29:45,925 QUANTIFY AND DEMONSTRATE THE 738 00:29:45,925 --> 00:29:51,731 IMPACT AS WELL. 739 00:29:51,731 --> 00:29:53,699 THERE WAS AN ASSESSMENT OF CVI 740 00:29:53,699 --> 00:29:57,236 AND A POINT SHARED WITH US THAT 741 00:29:57,236 --> 00:30:00,239 WERE TELLING AND TRAVELED ACROSS 742 00:30:00,239 --> 00:30:01,440 THE WORLD, SOUTH AMERICA AND 743 00:30:01,440 --> 00:30:04,176 MIDDLE EAST AND IN COUNTRIES OF 744 00:30:04,176 --> 00:30:05,111 CONFLICT GETTING CVI DIAGNOSIS 745 00:30:05,111 --> 00:30:07,213 MAY NOT BE THE BIGGEST PRIORITY 746 00:30:07,213 --> 00:30:09,048 IT'S ABOUT SURVIVAL. 747 00:30:09,048 --> 00:30:10,316 IT'S INCREDIBLE THERE'S THE 748 00:30:10,316 --> 00:30:11,383 POSSIBILITY OF STILL BEING ABLE 749 00:30:11,383 --> 00:30:12,384 TO TAKE CARE OF THESE 750 00:30:12,384 --> 00:30:13,819 INDIVIDUALS AND WORKING WITH THE 751 00:30:13,819 --> 00:30:17,490 TOOLS YOU HAVE THERE AND BEING 752 00:30:17,490 --> 00:30:18,858 RESOURCEFUL, ALWAYS LEVERAGING 753 00:30:18,858 --> 00:30:21,761 THE RESOURCES THAT EXIST AND 754 00:30:21,761 --> 00:30:23,629 CREATING SOME FORM OF 755 00:30:23,629 --> 00:30:25,097 SUSTAINABLE INFRASTRUCTURE. 756 00:30:25,097 --> 00:30:26,265 SHE SHARED WITH US IMPORTANT 757 00:30:26,265 --> 00:30:28,501 PUBLICATIONS IN TERMS OF HOW DO 758 00:30:28,501 --> 00:30:29,301 WE BUILD THESE SKILLS AND 759 00:30:29,301 --> 00:30:32,905 INFRASTRUCTURE AND AT THE SAME 760 00:30:32,905 --> 00:30:34,874 TIME THE 10 STEP PROCESS IN THE 761 00:30:34,874 --> 00:30:36,041 INTEREST OF TIME IT'S VERY MUCH 762 00:30:36,041 --> 00:30:36,842 A NEEDS ASSESSMENT. 763 00:30:36,842 --> 00:30:39,378 HOW YOU GO INTO ANY DIFFICULT 764 00:30:39,378 --> 00:30:39,645 SITUATION. 765 00:30:39,645 --> 00:30:40,513 YOU NEED TO ASSESS WHAT'S THERE 766 00:30:40,513 --> 00:30:42,047 AND WHAT YOU HAVE AND WHAT YOU 767 00:30:42,047 --> 00:30:43,949 NEED AND WHAT YOU DON'T HAVE AND 768 00:30:43,949 --> 00:30:46,051 HOW DO YOU BUILD FOR SUCCESS AND 769 00:30:46,051 --> 00:30:47,887 DEMONSTRATE SUCCESS AND BUILD 770 00:30:47,887 --> 00:30:50,289 FOR LONGEVITY AS WELL AND THE 771 00:30:50,289 --> 00:30:51,824 IMPORTANCE OF TEAM WORK. 772 00:30:51,824 --> 00:30:54,260 AND WE LOOKED AT THE IMPACT OF 773 00:30:54,260 --> 00:30:55,327 DIAGNOSTIC TESTING ON 774 00:30:55,327 --> 00:30:56,662 ACCOMMODATION AND TESTING. 775 00:30:56,662 --> 00:30:58,297 HE HAS A WONDERFUL QUOTE IN A 776 00:30:58,297 --> 00:30:59,932 CHAPTER AND I QUOTE THIS A LOT 777 00:30:59,932 --> 00:31:01,967 BECAUSE I THINK IT'S WONDERFUL, 778 00:31:01,967 --> 00:31:03,736 NO PATIENT IS CONSIDERED 779 00:31:03,736 --> 00:31:11,944 UNTESTABLE OR UNCOOPERATIVE. 780 00:31:11,944 --> 00:31:14,180 IT'S THE DOCTOR'S 781 00:31:14,180 --> 00:31:14,547 RESPONSIBILITY. 782 00:31:14,547 --> 00:31:16,715 IT'S ALL ABOUT US HELPING THEM 783 00:31:16,715 --> 00:31:20,920 SET THEM UP FOR SUCCESS. 784 00:31:20,920 --> 00:31:22,421 DR. KRAN TALKED ABOUT THE 785 00:31:22,421 --> 00:31:27,226 IMPORTANCE OF MAKING THE 786 00:31:27,226 --> 00:31:27,626 DIAGNOSE. 787 00:31:27,626 --> 00:31:31,197 IT'S THE FIRST DOMINO THAT HAS 788 00:31:31,197 --> 00:31:32,832 TO FALL AND SUPPORTING THE 789 00:31:32,832 --> 00:31:34,967 FAMILIES IS ULTIMATELY WHAT 790 00:31:34,967 --> 00:31:37,803 WE'RE IN THIS FOR. 791 00:31:37,803 --> 00:31:39,438 VERY OFTEN THE CAREGIVER START 792 00:31:39,438 --> 00:31:41,140 FROM ZERO AND MAY NEED A LOT OF 793 00:31:41,140 --> 00:31:41,807 SUPPORT. 794 00:31:41,807 --> 00:31:43,175 OUR RESPONSIBILITY AS EYE CARE 795 00:31:43,175 --> 00:31:44,543 PROVIDERS OR CLINICIANS OR 796 00:31:44,543 --> 00:31:46,212 PHYSICIANS IS NOT JUST TO MAKE 797 00:31:46,212 --> 00:31:47,313 THE DIAGNOSIS BUT THAT'S THE 798 00:31:47,313 --> 00:31:48,814 BEGINNING. 799 00:31:48,814 --> 00:31:50,683 WE HAVE TO FINISH OUR JOB WELL 800 00:31:50,683 --> 00:31:52,785 AFTER THEY LEAVE OUR CLINIC AS 801 00:31:52,785 --> 00:31:53,085 WELL. 802 00:31:53,085 --> 00:31:54,820 A COUPLE IMPORTANT RECEIVES AND 803 00:31:54,820 --> 00:31:55,988 PROVISIONS SHARED FROM THE 804 00:31:55,988 --> 00:31:57,223 DEPARTMENT OF EDUCATION 805 00:31:57,223 --> 00:31:58,023 PARTICULARLY FOR INDIVIDUAL 806 00:31:58,023 --> 00:32:00,192 WHO'S HAVE NORMAL OR NEAR NORMAL 807 00:32:00,192 --> 00:32:07,199 VISUAL ACUITY BUT ARE AL -- THT 808 00:32:07,199 --> 00:32:07,900 ARE FUNCTIONALLY IMPAIRED AND 809 00:32:07,900 --> 00:32:09,735 SHARED LINK. 810 00:32:09,735 --> 00:32:11,370 AND MYSELF I DISCUSSED THE ROLE 811 00:32:11,370 --> 00:32:14,039 OF NEURAL IMAGING. 812 00:32:14,039 --> 00:32:15,674 ONE IMPORTANT TAKEAWAY IS IT CAN 813 00:32:15,674 --> 00:32:18,277 BE HELPFUL BUT AT THE SAME TIME 814 00:32:18,277 --> 00:32:24,850 I THINK I CAN SPEAK AND SAY IT 815 00:32:24,850 --> 00:32:29,989 SHOULDN'T BE A REQUIRE AND I 816 00:32:29,989 --> 00:32:33,158 SHARED THIS IDEA OF THE NEURO 817 00:32:33,158 --> 00:32:33,959 RADIOLOGY PARADOX AND WHEN WE 818 00:32:33,959 --> 00:32:36,228 SEE STRUCTURAL CHANGES IT'S 819 00:32:36,228 --> 00:32:37,963 DIFFICULT TO CORRELATE THEM WITH 820 00:32:37,963 --> 00:32:39,398 FUNCTIONAL OUTCOMES AS WELL AND 821 00:32:39,398 --> 00:32:40,666 THERE'S A NUMBER OF REASONS TO 822 00:32:40,666 --> 00:32:41,467 GET INTO THAT. 823 00:32:41,467 --> 00:32:43,168 FIRST, ALL THE IMAGES LOOK 824 00:32:43,168 --> 00:32:43,969 DIFFERENT. 825 00:32:43,969 --> 00:32:45,804 HOW DO YOU QUANTIFY THAT, WHAT 826 00:32:45,804 --> 00:32:48,173 ARE YOU MEASURING AND WHAT HAS 827 00:32:48,173 --> 00:32:49,275 CHANGE AND WHAT ISN'T. 828 00:32:49,275 --> 00:32:51,243 THE TECHNIQUE TO DEMONSTRATE THE 829 00:32:51,243 --> 00:32:52,044 CHANGES COULD BE VARIABLE AS 830 00:32:52,044 --> 00:32:52,311 WELL. 831 00:32:52,311 --> 00:32:54,546 THE OUTCOMES THAT YOU WANT TO 832 00:32:54,546 --> 00:32:58,017 CORRELATE WITH, THE FUNCTIONAL 833 00:32:58,017 --> 00:33:01,787 OUTCOMES AND ACUITY ARE VARIOUS. 834 00:33:01,787 --> 00:33:03,789 AND THAT CREATES THIS 835 00:33:03,789 --> 00:33:04,523 MULTI-DIMENSIONAL DATA SET 836 00:33:04,523 --> 00:33:05,958 THAT'S HARD TO WORK WITH. 837 00:33:05,958 --> 00:33:07,826 WE'RE WORKING WITH 25 OR 30 OR 838 00:33:07,826 --> 00:33:10,262 50 PATIENTS DO YOU HAVE THE 839 00:33:10,262 --> 00:33:12,431 STATISTICAL POWER TO SEE 840 00:33:12,431 --> 00:33:13,699 SIGNIFICANT CHANGE? 841 00:33:13,699 --> 00:33:14,900 SOMETHING WE NEED TO CHOOSE 842 00:33:14,900 --> 00:33:16,135 WISELY THE OUTCOMES WE WANT TO 843 00:33:16,135 --> 00:33:17,102 WORK WITH. 844 00:33:17,102 --> 00:33:17,703 THERE'S EXAMPLES WHERE THIS 845 00:33:17,703 --> 00:33:19,038 WORKED OUT. 846 00:33:19,038 --> 00:33:20,139 I DRAW YOUR ATTENTION TO THE 847 00:33:20,139 --> 00:33:21,440 RESULT ON THE RIGHT SIDE. 848 00:33:21,440 --> 00:33:25,711 THIS IS WORK FROM THE UNIVERSITY 849 00:33:25,711 --> 00:33:28,714 OF PIZ AAND IT ALLOWS YOU TO 850 00:33:28,714 --> 00:33:30,015 LOOK AT STRUCTURAL IMAGES AND 851 00:33:30,015 --> 00:33:34,253 COME UP WITH A QUANTIFICATION OF 852 00:33:34,253 --> 00:33:37,957 LESION LOAD AND THE GLOBAL LEVEL 853 00:33:37,957 --> 00:33:40,492 AND LEVEL OF HEMISPHERIC AND USE 854 00:33:40,492 --> 00:33:45,631 THAT AS AN INDEX TO CORRELATE 855 00:33:45,631 --> 00:33:51,804 AGAINST A PARTICULAR FUNCTIONAL 856 00:33:51,804 --> 00:33:55,274 VISION AND YOU CAN DEMONSTRATE 857 00:33:55,274 --> 00:33:58,844 OCULAR MOTOR WITH THE THALAMUS. 858 00:33:58,844 --> 00:34:00,879 THERE'S THE POSSIBILITY OF 859 00:34:00,879 --> 00:34:02,047 CREATING THE BRAIN STRUCTURE AND 860 00:34:02,047 --> 00:34:04,583 FUNCTIONAL RELATIONSHIP. 861 00:34:04,583 --> 00:34:06,285 LASTLY WANT TO SHARE ALMOST OF 862 00:34:06,285 --> 00:34:09,989 ELEMENTS OF THE WORKING 863 00:34:09,989 --> 00:34:10,289 DEFINITION. 864 00:34:10,289 --> 00:34:11,991 THIS SIN PROGRESS AND I WANT TO 865 00:34:11,991 --> 00:34:13,959 HIGHLIGHT HERE SOME TAKEAWAYS 866 00:34:13,959 --> 00:34:14,793 AND THINGS THAT WE THOUGHT WERE 867 00:34:14,793 --> 00:34:16,895 IMPORTANT. 868 00:34:16,895 --> 00:34:19,231 IN TERMS OF A DIAGNOSIS. 869 00:34:19,231 --> 00:34:24,670 WE CONSIDER A SPECTRUM OF VISUAL 870 00:34:24,670 --> 00:34:30,275 IMPAIRMENT CAUSED BY FUNCTIONAL 871 00:34:30,275 --> 00:34:32,478 BRAIN ABNORMALITY AND THINKING 872 00:34:32,478 --> 00:34:35,347 OF FUNCTIONAL VISION ANYTHING 873 00:34:35,347 --> 00:34:37,616 UNDERLYING NEUROLOGICALLY AND 874 00:34:37,616 --> 00:34:40,886 THE DEVELOPMENTAL ASPECT. 875 00:34:40,886 --> 00:34:42,888 DYSFUNCTION IN CVI IS GREATER 876 00:34:42,888 --> 00:34:52,331 THAN EXPECTED WITH COMORBID 877 00:34:52,331 --> 00:34:54,199 CONDITIONS AND VISUAL 878 00:34:54,199 --> 00:34:56,135 ABNORMALITIES MAY MEASURE IN 879 00:34:56,135 --> 00:35:01,106 HIGHER OR LOWER ORDER WITHOUT 880 00:35:01,106 --> 00:35:03,042 EFFERENT OCULAR DISTURBANCES AND 881 00:35:03,042 --> 00:35:03,842 NEED TO UNDERSTAND HOW THE 882 00:35:03,842 --> 00:35:08,914 INFORMATION COMES IN AND ACT ON 883 00:35:08,914 --> 00:35:10,949 IT. 884 00:35:10,949 --> 00:35:15,120 AND WITH OTHER NEURODEVELOPMENT 885 00:35:15,120 --> 00:35:17,890 DISORDER IT'S NOT TO MEAN THE 886 00:35:17,890 --> 00:35:19,625 ISSUES CAN'T BE THERE BUT WE 887 00:35:19,625 --> 00:35:21,126 NEED TO UNDERSTAND THESE ARE 888 00:35:21,126 --> 00:35:21,927 SEPARATE ENTITIES AND NEED TO 889 00:35:21,927 --> 00:35:23,095 UNDERSTAND WHAT THE OVERLAP IS 890 00:35:23,095 --> 00:35:24,663 AND QUANTIFY IT. 891 00:35:24,663 --> 00:35:25,998 AND FINALLY THOUGH THE 892 00:35:25,998 --> 00:35:28,667 NEUROLOGICAL INSULT RESULTING IN 893 00:35:28,667 --> 00:35:31,603 CVI OCCURS IN THE DEVELOPING 894 00:35:31,603 --> 00:35:32,805 BRAIN INDIVIDUALS MAY REQUIRE 895 00:35:32,805 --> 00:35:34,473 LONG TERM SUPPORT EXTENDING TO 896 00:35:34,473 --> 00:35:34,940 ADULTHOOD. 897 00:35:34,940 --> 00:35:36,475 WE THINK OF CVI AS LARGELY A 898 00:35:36,475 --> 00:35:39,144 CHILD OR PEDIATRIC OR INFANT 899 00:35:39,144 --> 00:35:40,345 CONDITION AND THESE KIDS GROW UP 900 00:35:40,345 --> 00:35:42,147 AND HAVE LIVES AND WE HAVE TO BE 901 00:35:42,147 --> 00:35:43,215 THERE AS WELL. 902 00:35:43,215 --> 00:35:43,749 AND THAT WORK IS JUST AS 903 00:35:43,749 --> 00:35:46,251 IMPORTANT. 904 00:35:46,251 --> 00:35:49,988 WITH THAT YOU THANK YOU. 905 00:35:49,988 --> 00:35:55,594 -- WITH THAT I THANK YOU. 906 00:35:55,594 --> 00:36:02,868 >> SO NEXT WE HAVE DR. LANTZY 907 00:36:02,868 --> 00:36:09,208 GIVING US A SUMMARY AND THESE 908 00:36:09,208 --> 00:36:10,542 FROM THE LEMIEUX FAMILY CENTER 909 00:36:10,542 --> 00:36:19,918 IN PITTSBURGH. 910 00:36:19,918 --> 00:36:22,287 >> CROSS OUR FINGERS AND HOPE 911 00:36:22,287 --> 00:36:25,557 THIS PLUGS IN AND IS SEAMLESS. 912 00:36:25,557 --> 00:36:30,662 I WANT TO THANK THE NEI AND THE 913 00:36:30,662 --> 00:36:31,630 CO-CHAIRS FOR INCLUDING ME IN 914 00:36:31,630 --> 00:36:31,964 THE MEETING. 915 00:36:31,964 --> 00:36:35,000 IT'S AN HONOR TO BE HERE AND 916 00:36:35,000 --> 00:36:36,101 WILL BE MORE WONDERFUL IF THE 917 00:36:36,101 --> 00:36:46,345 IMAGES APPEAR. 918 00:36:47,279 --> 00:36:48,847 THIS IS FUN BECAUSE I GET TO 919 00:36:48,847 --> 00:36:50,682 TALK ABOUT THE CONFERENCE WE HAD 920 00:36:50,682 --> 00:36:53,986 TWO WEEKS AGO AND WE INVITED TO 921 00:36:53,986 --> 00:36:55,888 SUBMIT THEIR IDEAS AN OLD 922 00:36:55,888 --> 00:36:56,555 FASHIONED IDEA. 923 00:36:56,555 --> 00:36:59,057 WHAT WOULD YOU LIKE TO PRESENT 924 00:36:59,057 --> 00:37:01,994 AND TO HAVE A COMMITTEE OF 925 00:37:01,994 --> 00:37:04,830 PEOPLE LOOKING AT A DIVERSION 926 00:37:04,830 --> 00:37:05,330 POINT OF VIEW. 927 00:37:05,330 --> 00:37:07,399 WE DID NOT REPRESENT ANY SINGLE 928 00:37:07,399 --> 00:37:10,669 VIEW OF CVI AND TRIED TO REALLY 929 00:37:10,669 --> 00:37:12,671 RESPOND TO WHAT WE FELT PEOPLE 930 00:37:12,671 --> 00:37:14,273 WERE ASKING. 931 00:37:14,273 --> 00:37:17,276 WE REALLY EMBRACED A 932 00:37:17,276 --> 00:37:17,943 MULTI-DISCIPLINARY APPROACH TO 933 00:37:17,943 --> 00:37:22,247 BOTH PRESENTERS AND TO THE 934 00:37:22,247 --> 00:37:22,581 PARTICIPANTS. 935 00:37:22,581 --> 00:37:23,682 PEOPLE CAME WITH THE FIRST OF 936 00:37:23,682 --> 00:37:24,683 WHAT WE HOPE TO HAVE AS A YEARLY 937 00:37:24,683 --> 00:37:34,893 CONFERENCE. 938 00:37:41,466 --> 00:37:46,171 AND ALL THAT DEAL WITH SPECIAL 939 00:37:46,171 --> 00:37:49,474 NEEDS ADOPTION TO THERAPY AND 940 00:37:49,474 --> 00:37:50,509 FOUR HOSPITAL UNITS. 941 00:37:50,509 --> 00:37:52,344 IT'S AN UNUSUAL PLACE IN WHICH 942 00:37:52,344 --> 00:37:53,779 CHILDREN WHO MIGHT OTHERWISE 943 00:37:53,779 --> 00:37:55,881 FALL THROUGH THE CRACKS LAND. 944 00:37:55,881 --> 00:38:06,425 AND PEDIATRIC WAS THERE AS WELL. 945 00:38:14,900 --> 00:38:17,836 PEOPLE CAME FROM A NUMBER OF 946 00:38:17,836 --> 00:38:19,171 PLACES INCLUDING CANADA AND 947 00:38:19,171 --> 00:38:21,840 THAT'S A PARENT'S PICTURE AND AN 948 00:38:21,840 --> 00:38:25,978 OLD LADY BY THE WAY I'M AN 949 00:38:25,978 --> 00:38:28,447 AVERAGE HEIGHT WHITE WOMAN 950 00:38:28,447 --> 00:38:30,048 WEARING A FLORAL DRESS. 951 00:38:30,048 --> 00:38:32,584 IT HAD INDIVIDUALS WITH CVIs 952 00:38:32,584 --> 00:38:35,187 PRESENT AND PROFESSORS, FACULTY, 953 00:38:35,187 --> 00:38:40,292 EDUCATORS, THERAPIST AND OT/PT 954 00:38:40,292 --> 00:38:42,261 SPEECH AND PEOPLE FROM NEI AND 955 00:38:42,261 --> 00:38:45,197 PROGRAM ADMINISTRATORS AND 956 00:38:45,197 --> 00:38:48,267 AGENCY REPRESENTATIVES. 957 00:38:48,267 --> 00:38:51,803 A DIVERSE GROUP. 958 00:38:51,803 --> 00:38:54,539 TOPICS WERE RESEARCH, PRACTICE, 959 00:38:54,539 --> 00:38:55,607 COMMUNITY, INSIGHT. 960 00:38:55,607 --> 00:38:57,709 THERE WAS A KEY NOTE ADDRESS AND 961 00:38:57,709 --> 00:39:01,079 I THINK IT WAS INSIGHTFUL, 962 00:39:01,079 --> 00:39:01,647 POLICY AND ADVOCACY. 963 00:39:01,647 --> 00:39:04,249 SO IF YOUR INTERESTED IN MORE 964 00:39:04,249 --> 00:39:05,784 DETAILS I CAN PROVIDE THEM BUT 965 00:39:05,784 --> 00:39:07,753 WE TRIED TO TOUCH ON NOT HAVING 966 00:39:07,753 --> 00:39:10,956 IT JUST ON ONE THREAD BUT TO 967 00:39:10,956 --> 00:39:13,492 PROVIDE THINGS FOR PEOPLE FROM 968 00:39:13,492 --> 00:39:14,393 DIFFERENT PLACES ALONG THEIR 969 00:39:14,393 --> 00:39:19,965 INTEREST IN CVI CONTINUUM. 970 00:39:19,965 --> 00:39:25,170 MESSAGES FROM ATTENDEES ARE THE 971 00:39:25,170 --> 00:39:30,275 FOLLOWING AND SHARED WITH US. 972 00:39:30,275 --> 00:39:32,477 THEY SAID THERE WERE MORE 973 00:39:32,477 --> 00:39:34,279 PRESENTATIONS THAT HAD DATA THAN 974 00:39:34,279 --> 00:39:41,353 EVER BEFORE. 975 00:39:41,353 --> 00:39:44,523 WHEN WE STARTED THIS PROCESS I 976 00:39:44,523 --> 00:39:46,391 DON'T THINK WE COULD SPELL DATA 977 00:39:46,391 --> 00:39:51,830 BUT PEOPLE ARE COMING TOGETHER 978 00:39:51,830 --> 00:40:00,739 FROM JAGS IT'S NICE TO SEE 979 00:40:00,739 --> 00:40:02,140 EXAMPLES OF PROGRAMS EFFECTIVE 980 00:40:02,140 --> 00:40:07,779 AND WHY ARE THEY SO SCARCE WAS A 981 00:40:07,779 --> 00:40:08,013 COMMENT. 982 00:40:08,013 --> 00:40:10,482 SOME PARENTS LEFT THE MEETING 983 00:40:10,482 --> 00:40:11,750 BUMMED OUT THEIR CHILDREN 984 00:40:11,750 --> 00:40:12,451 WEREN'T HAVING ACCESS TO THE 985 00:40:12,451 --> 00:40:16,455 KINDS OF PROGRAMS PRESENTED. 986 00:40:16,455 --> 00:40:18,790 HOW DO WE CHANGE POLICY SO THAT 987 00:40:18,790 --> 00:40:20,592 ALL STATES RECOGNIZE AND SERVE 988 00:40:20,592 --> 00:40:22,861 STUDENTS WITH CVI AND WHEN 989 00:40:22,861 --> 00:40:24,229 APPROPRIATE IDENTIFY IT AS 990 00:40:24,229 --> 00:40:26,231 EDUCATIONAL AND VISUALLY 991 00:40:26,231 --> 00:40:26,498 IMPAIRED. 992 00:40:26,498 --> 00:40:28,500 HOW DO WE MAKE SURE WE DON'T 993 00:40:28,500 --> 00:40:30,602 MISS ANYONE AND ANYONE WHO HAS A 994 00:40:30,602 --> 00:40:31,970 BRAIN-BASED VISUAL IMPAIRMENT 995 00:40:31,970 --> 00:40:33,638 GETS WHAT THEY NEED? 996 00:40:33,638 --> 00:40:35,407 ANOTHER COMMENT WAS IT WAS 997 00:40:35,407 --> 00:40:38,844 INTERESTING TO HEAR CVI FROM THE 998 00:40:38,844 --> 00:40:40,178 PERSPECTIVE OF PROVIDERS ACROSS 999 00:40:40,178 --> 00:40:43,782 MEDICINE AND THERAPY AND A MAJOR 1000 00:40:43,782 --> 00:40:45,851 STEP WE HAD GOVERNMENT 1001 00:40:45,851 --> 00:40:46,651 REPRESENTATIVES AS WELL. 1002 00:40:46,651 --> 00:40:49,621 TOPICS REQUEST FOR FUTURE 1003 00:40:49,621 --> 00:40:51,857 MEETINGS IS HOW TO SUPPORT 1004 00:40:51,857 --> 00:40:52,524 INDIVIDUALS AS THEY TRANSITION 1005 00:40:52,524 --> 00:40:53,525 TO ADULTHOOD. 1006 00:40:53,525 --> 00:40:55,694 WE HEARD THIS A FEW TIMES TODAY. 1007 00:40:55,694 --> 00:40:58,663 I THINK WE ALL KNOW THIS IS A 1008 00:40:58,663 --> 00:41:02,634 NEED THAT IS -- WE HAVE TO CROSS 1009 00:41:02,634 --> 00:41:04,136 THIS THRESHOLD. 1010 00:41:04,136 --> 00:41:07,038 RESEARCH AND DATA DRIVEN 1011 00:41:07,038 --> 00:41:07,973 OUTCOMES AREN'T NECESSARY. 1012 00:41:07,973 --> 00:41:10,609 TO SHOW EXAMPLES IT WAS 1013 00:41:10,609 --> 00:41:12,844 INTERESTING THE PICTURE AT THE 1014 00:41:12,844 --> 00:41:15,013 BOTTOM LEFT THIS SHOWS A GIRL 1015 00:41:15,013 --> 00:41:18,283 LOOKING AT AN iPAD AND IN THAT 1016 00:41:18,283 --> 00:41:19,885 PICTURE THIS REPRESENTS 1017 00:41:19,885 --> 00:41:22,254 SOMETHING WE'VE DONE WITH ONE OF 1018 00:41:22,254 --> 00:41:26,291 THE PRESENTATIONS IN WHICH 1019 00:41:26,291 --> 00:41:28,960 THEY'RE COLLECTING WAYS AND DATA 1020 00:41:28,960 --> 00:41:30,429 AND SHOWING INTERESTING THINGS 1021 00:41:30,429 --> 00:41:33,331 THAT SUBSTANTIATE OR NEGATE WHAT 1022 00:41:33,331 --> 00:41:34,332 WE THINK WE'RE SEEING WHEN 1023 00:41:34,332 --> 00:41:35,867 STUDENTS LOOK AT SOMETHING 1024 00:41:35,867 --> 00:41:37,969 VERSUS WHAT THEY'RE ACTUALLY 1025 00:41:37,969 --> 00:41:45,010 ATTENDING TO. 1026 00:41:45,010 --> 00:41:46,445 THESE ARE DATA TEACHERS CAN 1027 00:41:46,445 --> 00:41:48,880 COLLECT IN THEIR PRACTICE? 1028 00:41:48,880 --> 00:41:52,717 OTHER QUESTIONS PEOPLE ASKED FOR 1029 00:41:52,717 --> 00:41:59,224 BETTER METHODS TO SORT CVI AND I 1030 00:41:59,224 --> 00:42:01,493 DON'T THINK THE AUDIO WILL PLAY 1031 00:42:01,493 --> 00:42:03,428 BUT THE PANEL ON THE LEFT SHOWS 1032 00:42:03,428 --> 00:42:08,700 A PERSON PARTICIPATING IN AN 1033 00:42:08,700 --> 00:42:09,501 ACTIVITY THEY'RE ASKED TO 1034 00:42:09,501 --> 00:42:13,972 FIND -- CAN YOU HEAR IT? 1035 00:42:13,972 --> 00:42:23,815 >> YELLOW. 1036 00:42:23,815 --> 00:42:28,019 >> THIS IS A BOY WITH ASD. 1037 00:42:28,019 --> 00:42:31,990 HE'S DOING A TASK IN WHICH HE 1038 00:42:31,990 --> 00:42:34,860 LOOKS FOR COLORED BALLS AGAINST 1039 00:42:34,860 --> 00:42:35,827 INCREASINGLY COMPLEX 1040 00:42:35,827 --> 00:42:36,127 BACKGROUNDS. 1041 00:42:36,127 --> 00:42:39,698 HE FINDS THEM NO PROBLEM. 1042 00:42:39,698 --> 00:42:40,799 LISTEN TO WHAT HAPPENS WHEN HE'S 1043 00:42:40,799 --> 00:42:41,666 ASKED A QUESTION. 1044 00:42:41,666 --> 00:42:42,934 THINK ABOUT HIS RECEPTIVE 1045 00:42:42,934 --> 00:42:43,201 LANGUAGE. 1046 00:42:43,201 --> 00:42:45,770 >> CAN I HAVE THE YELLOW ONE? 1047 00:42:45,770 --> 00:42:48,707 MAY I HAVE THE YELLOW ONE? 1048 00:42:48,707 --> 00:42:54,012 >> WHERE'S THE YELLOW ONE? 1049 00:42:54,012 --> 00:42:54,379 >> NOT SO MUCH. 1050 00:42:54,379 --> 00:42:56,314 NOT SO MUCH. 1051 00:42:56,314 --> 00:42:57,115 SO IT'S IMPORTANT. 1052 00:42:57,115 --> 00:42:58,216 THERE ARE SIGNALS, THERE ARE 1053 00:42:58,216 --> 00:43:00,485 WAYS WE CAN BEGIN TO SORT AND 1054 00:43:00,485 --> 00:43:02,087 THAT'S WHAT SOME PEOPLE ARE 1055 00:43:02,087 --> 00:43:03,288 INTERESTED IN. 1056 00:43:03,288 --> 00:43:05,991 THE PANEL ON THE FAR RIGHT SHOWS 1057 00:43:05,991 --> 00:43:08,793 A BOY DOING THE SAME TASK WITH 1058 00:43:08,793 --> 00:43:12,163 THE DIAGNOSIS OF CVI AND CANNOT 1059 00:43:12,163 --> 00:43:14,199 ONLY NOT FIND THE BALLS BUT 1060 00:43:14,199 --> 00:43:16,368 THROWS IT OVERBOARD AND WANTS NO 1061 00:43:16,368 --> 00:43:17,702 PART OF IT. 1062 00:43:17,702 --> 00:43:18,870 THE ONE ON THE PANEL SHOWS THE 1063 00:43:18,870 --> 00:43:21,072 BOY ON THE LEFT HOW HE ARRANGED 1064 00:43:21,072 --> 00:43:22,407 THE BALL REGARDLESS OF HOW 1065 00:43:22,407 --> 00:43:24,476 COMPLEX THE BACKGROUND PATTERN 1066 00:43:24,476 --> 00:43:24,809 WAS. 1067 00:43:24,809 --> 00:43:27,679 THAT WAS NOT ON OBSTACLE FOR 1068 00:43:27,679 --> 00:43:28,013 HIM. 1069 00:43:28,013 --> 00:43:28,647 COLOR SORTING THEM BECAUSE HE 1070 00:43:28,647 --> 00:43:30,849 WANTED TO. 1071 00:43:30,849 --> 00:43:32,417 THAT WAS ONE OF THE THINGS 1072 00:43:32,417 --> 00:43:34,452 PEOPLE SAID WE NEED TO LOOK AT 1073 00:43:34,452 --> 00:43:36,187 THIS MORE CAREFULLY AND I HEARD 1074 00:43:36,187 --> 00:43:37,989 THAT ALREADY THIS MORNING AS 1075 00:43:37,989 --> 00:43:38,256 WELL. 1076 00:43:38,256 --> 00:43:39,891 ADDITIONAL TOPICS WERE ADVOCACY 1077 00:43:39,891 --> 00:43:42,260 FOR LEGAL AND EDUCATIONAL RIGHTS 1078 00:43:42,260 --> 00:43:44,729 OF INDIVIDUALS WITH CVI. 1079 00:43:44,729 --> 00:43:45,830 TECHNOLOGY RESEARCH FOR 1080 00:43:45,830 --> 00:43:48,366 INDIVIDUALS WITH CVI, ACCESS TO 1081 00:43:48,366 --> 00:43:49,968 ORIENTATION AND MOBILITY 1082 00:43:49,968 --> 00:43:52,737 SERVICES FOR STUDENTS WITH CVI. 1083 00:43:52,737 --> 00:43:53,605 IT'S PRETTY SCARCE. 1084 00:43:53,605 --> 00:43:57,709 IT SHOULDN'T BE BUT SADLY IT IS. 1085 00:43:57,709 --> 00:43:58,944 SUPPORTING THE ADVOCACY OF 1086 00:43:58,944 --> 00:44:04,416 INTERVENTIONS AND ACO KCCOMMODAS 1087 00:44:04,416 --> 00:44:06,117 AND NEED TO PROVE WHAT WORKS OR 1088 00:44:06,117 --> 00:44:08,453 DOESN'T AND CLARIFICATION OF THE 1089 00:44:08,453 --> 00:44:09,487 DEFINITIONS OF CVI. 1090 00:44:09,487 --> 00:44:11,056 YOU GOT THAT NAILED DOWN 1091 00:44:11,056 --> 00:44:11,456 YESTERDAY, RIGHT? 1092 00:44:11,456 --> 00:44:15,126 GOOD. 1093 00:44:15,126 --> 00:44:21,199 ALSO NEXT YEAR I PRESENT THE 1094 00:44:21,199 --> 00:44:23,435 DATA BANK OF ABOUT 1,008 1095 00:44:23,435 --> 00:44:25,971 PATIENTS AND I JUST RECEIVED THE 1096 00:44:25,971 --> 00:44:26,838 INFORMATION THIS WEEK. 1097 00:44:26,838 --> 00:44:28,607 IT'S VERY PRELIMINARY BUT WE'RE 1098 00:44:28,607 --> 00:44:30,709 LOOKING AT THINGS ACROSS THE 1099 00:44:30,709 --> 00:44:32,744 SPECTRUM OF INFORMATION AND HOPE 1100 00:44:32,744 --> 00:44:34,512 TO BE ABLE TO PRESENT NEXT YEAR 1101 00:44:34,512 --> 00:44:37,349 BUT RIGHT NOW THE AVERAGE AGE OF 1102 00:44:37,349 --> 00:44:39,517 DIAGNOSIS THE MEAN WAS ABOUT 3.2 1103 00:44:39,517 --> 00:44:41,086 YEARS OF AGE. 1104 00:44:41,086 --> 00:44:46,024 THE MEAN GESTATIONAL AGE WAS 36 1105 00:44:46,024 --> 00:44:46,257 WEEKS. 1106 00:44:46,257 --> 00:44:48,193 THE MEAN BIRTH WEIGHT WAS 2643 1107 00:44:48,193 --> 00:44:48,526 GRAMS. 1108 00:44:48,526 --> 00:44:50,895 THE TIME THE CHILD SPENT IN THE 1109 00:44:50,895 --> 00:45:01,373 NICU OR PICU WAS SIX WEEKS. 1110 00:45:02,040 --> 00:45:06,244 57% WERE MALE AND 43% FEMALE AND 1111 00:45:06,244 --> 00:45:09,814 ONGOING SEIZURES AND THE MEDIAN 1112 00:45:09,814 --> 00:45:10,682 RANGE SCORE IS 3. 1113 00:45:10,682 --> 00:45:12,250 I'LL LOOK FORWARD TO GETTING THE 1114 00:45:12,250 --> 00:45:15,620 REST OF THE DATA ANALYZED. 1115 00:45:15,620 --> 00:45:17,489 PRIMARY NEUROLOGIC CONDITIONS 1116 00:45:17,489 --> 00:45:20,225 WERE NIE AND ALL THE RARE 1117 00:45:20,225 --> 00:45:22,627 GENETIC CONDITIONS WHEN CLUMPED 1118 00:45:22,627 --> 00:45:23,428 TOGETHER. 1119 00:45:23,428 --> 00:45:24,295 ADDITIONAL VISION CONSIDERATIONS 1120 00:45:24,295 --> 00:45:27,599 WAS BY FAR THE NUMBER ONE THING 1121 00:45:27,599 --> 00:45:33,738 WAS OPTIC NERVE DISORDERS IT'S 1122 00:45:33,738 --> 00:45:35,507 NOT FINAL ANALYSIS OF THE DATA. 1123 00:45:35,507 --> 00:45:37,976 THE NEXT CONFERENCE -- THIS IS 1124 00:45:37,976 --> 00:45:39,778 INCORRECT BECAUSE I GOT A TEXT 1125 00:45:39,778 --> 00:45:41,980 THIS MORNING SAYING THEY'RE NOW 1126 00:45:41,980 --> 00:45:43,281 LOOKING AT THE FIRST THURSDAY 1127 00:45:43,281 --> 00:45:45,483 AND FRIDAY IN OCTOBER 2024 BUT 1128 00:45:45,483 --> 00:45:45,784 STAY TUNED. 1129 00:45:45,784 --> 00:45:55,126 THANK YOU. 1130 00:45:55,126 --> 00:45:58,263 >> THANK YOU VERY MUCH 1131 00:45:58,263 --> 00:45:59,664 DR. ROMAN. 1132 00:45:59,664 --> 00:46:01,866 OUR NEXT SPEAKER IS NAI DAMATO 1133 00:46:01,866 --> 00:46:06,838 AN ACCESS TECHNOLOGY SPECIALIST 1134 00:46:06,838 --> 00:46:11,609 DEF BLIND TUTOR, VICTORY AND 1135 00:46:11,609 --> 00:46:13,611 CVIER AND WORK AT THE LIGHTHOUSE 1136 00:46:13,611 --> 00:46:16,414 FOR THE BLIND IN SAN FRANCISCO 1137 00:46:16,414 --> 00:46:18,249 AND WILL SHARE THEIR PERSONAL 1138 00:46:18,249 --> 00:46:28,593 PERSPECTIVE OF CVI. 1139 00:46:36,501 --> 00:46:37,368 >> GOOD MORNING, EVERYONE. 1140 00:46:37,368 --> 00:46:41,005 THIS IS NAI. 1141 00:46:41,005 --> 00:46:42,607 IT'S WONDERFUL TO BE HERE AND 1142 00:46:42,607 --> 00:46:45,310 GRATEFUL THE NEI IS FUNDING ALL 1143 00:46:45,310 --> 00:46:48,646 THE RESEARCH AND UNDERSTANDING. 1144 00:46:48,646 --> 00:46:49,981 I WANTED TO SHARE A BIT ABOUT 1145 00:46:49,981 --> 00:46:54,786 CVI FROM A PERSONAL PERSPECTIVE. 1146 00:46:54,786 --> 00:46:56,988 AS WE ALL KNOW ONE OF THE 1147 00:46:56,988 --> 00:46:58,323 IMPORTANT THINGS WITH CVI 1148 00:46:58,323 --> 00:47:00,024 DIAGNOSIS IS GETTING THE MEDICAL 1149 00:47:00,024 --> 00:47:03,094 HISTORY SO I WANTED TO SHARE A 1150 00:47:03,094 --> 00:47:05,830 BIT ABOUT THAT. 1151 00:47:05,830 --> 00:47:08,967 I WAS BORN THREE MONTHS 1152 00:47:08,967 --> 00:47:12,937 PREMATURE IN SOVIET RUSSIA AND 1153 00:47:12,937 --> 00:47:17,275 SPENT MY FIRST YEAR IN AN 1154 00:47:17,275 --> 00:47:19,010 INCUBATOR AND TRANSFERRED TO 1155 00:47:19,010 --> 00:47:21,980 ORPHANAGE AND HAD UNDIAGNOSED 1156 00:47:21,980 --> 00:47:23,715 OCULAR CONDITIONS UNTIL AGE 12 1157 00:47:23,715 --> 00:47:26,818 WHEN I FAILED A VISION SCREENING 1158 00:47:26,818 --> 00:47:29,554 AND WAS THEN IDENTIFIED AS 1159 00:47:29,554 --> 00:47:32,190 HAVING FUNCTION AT THE LEVEL OF 1160 00:47:32,190 --> 00:47:33,191 LEGAL BLINDNESS. 1161 00:47:33,191 --> 00:47:35,660 BUT MY OCULAR CONDITIONS WERE 1162 00:47:35,660 --> 00:47:38,263 RESOLVED LEAVING ME WITH A BRAIN 1163 00:47:38,263 --> 00:47:42,901 THAT HAD WIRED ITSELF AROUND 12 1164 00:47:42,901 --> 00:47:44,969 YEARS OF A SOUP OF COLORS. 1165 00:47:44,969 --> 00:47:49,207 I COULD UNDERSTAND COLORS VERY 1166 00:47:49,207 --> 00:47:53,578 WELL BUT HAD ALL THE VISUAL 1167 00:47:53,578 --> 00:47:55,980 ILLUSION AND THAT'S WHEN I 1168 00:47:55,980 --> 00:47:59,017 STARTED GOING TO VISION THERAPY 1169 00:47:59,017 --> 00:48:04,455 FOR TIMES A WEEK. 1170 00:48:04,455 --> 00:48:06,191 VISION THERAPY ADDRESSED A LOT 1171 00:48:06,191 --> 00:48:09,394 OF THE OCULAR MOTOR ISSUES BUT 1172 00:48:09,394 --> 00:48:11,462 WHAT THE TEAM WHO WERE GREAT AT 1173 00:48:11,462 --> 00:48:13,031 WHAT THEY KNEW DIDN'T KNOW WAS 1174 00:48:13,031 --> 00:48:17,302 THAT MY OCULAR MOTOR ISSUES WERE 1175 00:48:17,302 --> 00:48:20,538 THE FINGER POINTING WITH THE 1176 00:48:20,538 --> 00:48:23,074 MOON WITH THE MOON BEING CVI. 1177 00:48:23,074 --> 00:48:25,977 I WAS ABLE TO IMPROVE SOME 1178 00:48:25,977 --> 00:48:29,414 OCULAR MOTOR STUFF THROUGH 1179 00:48:29,414 --> 00:48:31,516 CONSCIOUS CONTROL BUT WHEN IT 1180 00:48:31,516 --> 00:48:35,153 CAME TO EXERCISES THAT REQUIRED 1181 00:48:35,153 --> 00:48:35,787 MULTITASKING THAT'S WHEN THE 1182 00:48:35,787 --> 00:48:40,558 WHEELS REALLY STARTED TO FALL 1183 00:48:40,558 --> 00:48:42,260 OFF. 1184 00:48:42,260 --> 00:48:43,995 SO FOR EXAMPLE I WOULD HAVE TO 1185 00:48:43,995 --> 00:48:47,165 LEARN HOW TO CONTROL MY EYE 1186 00:48:47,165 --> 00:48:49,968 MUSCLES CONSCIOUSLY BUT I 1187 00:48:49,968 --> 00:48:53,705 COULDN'T DO THAT AND WALK AROUND 1188 00:48:53,705 --> 00:48:56,407 OR IN FACT I COULDN'T VEEP DO 1189 00:48:56,407 --> 00:48:57,942 THAT OR ANYTHING ELSE. 1190 00:48:57,942 --> 00:49:01,212 I WOULD HAVE TO FOCUS SO HARD 1191 00:49:01,212 --> 00:49:02,981 THAT MANY TIMES DURING VISION 1192 00:49:02,981 --> 00:49:13,691 THERAPY MY HEART WOULD START 1193 00:49:15,627 --> 00:49:19,530 PALPITATIING BECAUSE I COULDN'T 1194 00:49:19,530 --> 00:49:21,032 REMEMBER TO BREATHE. 1195 00:49:21,032 --> 00:49:27,605 DURING THAT PERIOD I HAD NEAR 1196 00:49:27,605 --> 00:49:38,082 NORMAL ACUITY -- I HAD HEAD 1197 00:49:46,190 --> 00:49:53,865 TRAUMA AND I WAS ABLE FOR BLIND 1198 00:49:53,865 --> 00:49:56,534 SERVICES BECAUSE I PET THE 1199 00:49:56,534 --> 00:49:57,802 DEFINITION OF LEGAL BLINDNESS 1200 00:49:57,802 --> 00:50:00,672 AND OPENED UP TO A NEW WORLD OF 1201 00:50:00,672 --> 00:50:01,973 BRAILLE, ACCESS TO TECHNOLOGY 1202 00:50:01,973 --> 00:50:02,840 AND NAVIGATION SKILLS AND SO ON 1203 00:50:02,840 --> 00:50:05,343 AND SO FORTH. 1204 00:50:05,343 --> 00:50:07,979 IN RETROSPECT I WISH I HAD HAD 1205 00:50:07,979 --> 00:50:09,614 ACCESS TO ALL THOSE SERVICES 1206 00:50:09,614 --> 00:50:13,584 WHEN I HAD TYPICAL ACUITY 1207 00:50:13,584 --> 00:50:23,995 BECAUSE THE WORLD WAS A 1208 00:50:24,662 --> 00:50:27,865 CACOPHONY OF COLOR AND THINGS 1209 00:50:27,865 --> 00:50:31,970 LIKE VISUAL MOTION EXPERIENCED 1210 00:50:31,970 --> 00:50:35,940 TO LIKE TACTILE SENSATION. 1211 00:50:35,940 --> 00:50:37,976 AS I WOULD WALK TOWARD IN SPACE 1212 00:50:37,976 --> 00:50:40,979 I FELT I WAS BEING CONSTANTLY 1213 00:50:40,979 --> 00:50:43,948 PUNCHED IN THE FACE. 1214 00:50:43,948 --> 00:50:47,185 I THINK ONE OF THE TAKEAWAYS -- 1215 00:50:47,185 --> 00:50:49,287 SORRY, I WANT TO MAKE SURE THE 1216 00:50:49,287 --> 00:50:51,289 MIC IS ACCESSIBLE. 1217 00:50:51,289 --> 00:50:52,924 ONE OF THE TAKEAWAYS FROM THE 1218 00:50:52,924 --> 00:50:54,258 EXPERIENCES I'D LIKE TO SHARE AS 1219 00:50:54,258 --> 00:50:56,494 WE MOVE FORWARD IN THIS 1220 00:50:56,494 --> 00:50:57,862 WONDERFUL RESEARCH UNDERWAY AND 1221 00:50:57,862 --> 00:51:01,032 THAT'S BEEN STARTED BY SO MANY 1222 00:51:01,032 --> 00:51:06,904 GREAT PEOPLE MANY OF YOU IN THIS 1223 00:51:06,904 --> 00:51:09,907 ROOM IS TO CONSIDER THE 1224 00:51:09,907 --> 00:51:10,508 INTERVIEW PROCESS WHENEVER 1225 00:51:10,508 --> 00:51:11,642 POSSIBLE FOR CVIs WHO ARE VERBAL 1226 00:51:11,642 --> 00:51:14,545 AND WHO HAVE THE ABILITY TO 1227 00:51:14,545 --> 00:51:16,914 ARTICULATE OUR INTERNAL 1228 00:51:16,914 --> 00:51:17,215 EXPERIENCES. 1229 00:51:17,215 --> 00:51:19,851 THIS IS SUCH AN IMPORTANT PART 1230 00:51:19,851 --> 00:51:25,123 OF THE PROCESS OF UNDERSTANDING 1231 00:51:25,123 --> 00:51:25,523 CVI. 1232 00:51:25,523 --> 00:51:27,625 WE NEED EVALUATION OF BEHAVIOR 1233 00:51:27,625 --> 00:51:30,261 AND DATA AND SO ON AND ALL THOSE 1234 00:51:30,261 --> 00:51:33,564 ARE VERY IMPORTANT BUT WE ALSO 1235 00:51:33,564 --> 00:51:34,899 NEED EXPLANATION AND DESCRIPTION 1236 00:51:34,899 --> 00:51:37,835 FROM THE INSIDE-OUT SO THAT WE 1237 00:51:37,835 --> 00:51:41,005 CAN BE GUIDED ACCURATELY IN HOW 1238 00:51:41,005 --> 00:51:42,273 WE INTERPRET THAT DATA. 1239 00:51:42,273 --> 00:51:46,044 SO MANY TIMES THROUGHOUT MY LIFE 1240 00:51:46,044 --> 00:51:47,812 PEOPLE WOULD LOSE THEIR 1241 00:51:47,812 --> 00:51:51,716 OBSERVATIONS AND DRAW INCORRECT 1242 00:51:51,716 --> 00:51:52,016 CONCLUSIONS. 1243 00:51:52,016 --> 00:51:54,218 INSTEAD OF SAYING -- SORRY, SUCH 1244 00:51:54,218 --> 00:51:55,987 AS SAYING YOU MUST HAVE SEEN ME 1245 00:51:55,987 --> 00:52:01,325 BECAUSE YOU'RE EYES WERE 1246 00:52:01,325 --> 00:52:05,363 POINTING AT ME OR OR ASSUMING -- 1247 00:52:05,363 --> 00:52:07,031 >> WE'LL THE MICROPHONE. 1248 00:52:07,031 --> 00:52:07,365 >> THANK YOU. 1249 00:52:07,365 --> 00:52:17,675 SORRY ABOUT THAT. 1250 00:52:23,381 --> 00:52:25,750 I HAD MUSCLE MEMORY AND SO ON 1251 00:52:25,750 --> 00:52:27,752 AND THE CVI SXUNT THOSE 1252 00:52:27,752 --> 00:52:29,887 EXPERIENCING IT CAN BRING WISDOM 1253 00:52:29,887 --> 00:52:31,089 TO THE RESEARCH ON TECHNIQUES WE 1254 00:52:31,089 --> 00:52:33,124 CAN USE NOT ONLY TO IMPROVE 1255 00:52:33,124 --> 00:52:37,328 VISION FOR THOSE WHO WANT IT BUT 1256 00:52:37,328 --> 00:52:39,564 TO IMPROVE QUALITY OF LIFE FOR 1257 00:52:39,564 --> 00:52:43,401 THOSE OF US WHO DON'T NEED 1258 00:52:43,401 --> 00:52:45,503 VISION IN ORDER TO ENJOY THEIR 1259 00:52:45,503 --> 00:52:47,338 LIVES. 1260 00:52:47,338 --> 00:52:55,012 FOR EXAMPLE, SEMANTIC BUT 1261 00:52:55,012 --> 00:52:57,048 BUTTRESSING USING AUDITORY 1262 00:52:57,048 --> 00:53:01,552 MEMORY AND TRANSLATION IN MY 1263 00:53:01,552 --> 00:53:02,787 HEADS AWAY TO MAKE UP FOR THE 1264 00:53:02,787 --> 00:53:04,789 ABILITY TO HOLD ON TO VISUAL 1265 00:53:04,789 --> 00:53:05,156 CONCEPTS. 1266 00:53:05,156 --> 00:53:07,625 FOR EXAMPLE WHEN I WAS TESTED ON 1267 00:53:07,625 --> 00:53:08,259 VISUAL MEMORY I COULDN'T 1268 00:53:08,259 --> 00:53:11,395 REMEMBER A TRIANGLE BUT COULD 1269 00:53:11,395 --> 00:53:13,197 REMEMBER THE GREEK LETTER DELTA. 1270 00:53:13,197 --> 00:53:16,534 I COULDN'T REMEMBER A SQUARE BUT 1271 00:53:16,534 --> 00:53:18,603 COULD REMEMBER THE CHINESE 1272 00:53:18,603 --> 00:53:19,871 CHARACTER WHICH IS SQUARE SHAPED 1273 00:53:19,871 --> 00:53:21,506 AND SO ON. 1274 00:53:21,506 --> 00:53:24,008 SO MANY OF US CVIERS BECAUSE OF 1275 00:53:24,008 --> 00:53:28,279 OUR EXPERIENCES OF NOT HAVING 1276 00:53:28,279 --> 00:53:29,780 BEEN IDENTIFIED SO LONG 1277 00:53:29,780 --> 00:53:32,016 ESTABLISHED THESE PROCESSES FOR 1278 00:53:32,016 --> 00:53:33,684 MAKING DUE AND THIS CAN BECOME 1279 00:53:33,684 --> 00:53:35,153 WISDOM WE BRING INTO THE 1280 00:53:35,153 --> 00:53:38,089 RESEARCH AND INTO REHAB 1281 00:53:38,089 --> 00:53:38,623 TECHNIQUES FOR CVI MOVING 1282 00:53:38,623 --> 00:53:41,125 FORWARD. 1283 00:53:41,125 --> 00:53:46,264 MY ULTIMATE DREAM IS IS TO SEE A 1284 00:53:46,264 --> 00:53:49,267 NEURAL PROCESSING BASED INCLUDED 1285 00:53:49,267 --> 00:53:50,568 IN THE DEFINITION OF LEGAL 1286 00:53:50,568 --> 00:53:51,936 BLINDNESS WHICH WILL START WITH 1287 00:53:51,936 --> 00:53:53,371 A LOT OF THESE ASSESSMENTS THAT 1288 00:53:53,371 --> 00:53:54,472 ARE BEING CREATED NOW AND BEING 1289 00:53:54,472 --> 00:53:57,642 REFINED. 1290 00:53:57,642 --> 00:53:59,143 SO THAT REGARDLESS OF VISION 1291 00:53:59,143 --> 00:54:05,750 FIELD AND ACUITY SERVICES AND 1292 00:54:05,750 --> 00:54:06,918 MEDICAL SUPPORT WILL ALSO BE 1293 00:54:06,918 --> 00:54:08,920 AVAILABLE TO ALL INDIVIDUALS OF 1294 00:54:08,920 --> 00:54:10,154 CVI. 1295 00:54:10,154 --> 00:54:12,323 I ALSO WANT TO POINT OUT THIS IS 1296 00:54:12,323 --> 00:54:15,092 BENEFICIAL NOT ONLY TO PROVIDE 1297 00:54:15,092 --> 00:54:19,130 SS BUT ALSO BECAUSE WHEN WE'RE 1298 00:54:19,130 --> 00:54:23,201 UNDIAGNOSED THAT LACK OF SERVICE 1299 00:54:23,201 --> 00:54:25,503 ALSO INCREASES ON THE 1300 00:54:25,503 --> 00:54:26,003 OPPORTUNITY FOR BEING 1301 00:54:26,003 --> 00:54:28,606 SUSCEPTIBLE TO ABUSE AND OTHER 1302 00:54:28,606 --> 00:54:29,874 FORMS OF TRAUMA. 1303 00:54:29,874 --> 00:54:33,010 THIS IS NOT JUST ABOUT MAKING 1304 00:54:33,010 --> 00:54:34,245 SURE THAT BRAILLE LITERACY AND 1305 00:54:34,245 --> 00:54:36,180 SO ON ARE AVAILABLE BUT MAKING 1306 00:54:36,180 --> 00:54:37,315 SURE THAT CHILDREN WHO ALSO THEN 1307 00:54:37,315 --> 00:54:42,253 BECOME ADULTS CAN HAVE SAFER 1308 00:54:42,253 --> 00:54:46,557 EXPERIENCES FROM THE VERY 1309 00:54:46,557 --> 00:54:48,960 BEGINNING WHERE MEDICAL, 1310 00:54:48,960 --> 00:54:50,962 EDUCATIONAL AND COMMUNITY 1311 00:54:50,962 --> 00:54:51,963 MEMBERS ARE ALL ON THE SAME TEAM 1312 00:54:51,963 --> 00:54:56,734 WITH THOSE INDIVIDUALS WITH CVI. 1313 00:54:56,734 --> 00:55:01,706 I'D ALSO LOVE TO SEE US CONTINUE 1314 00:55:01,706 --> 00:55:03,207 TO REFINE HOW WE SCALE CVI 1315 00:55:03,207 --> 00:55:07,745 ACROSS MULTIPLE DIMENSIONS. 1316 00:55:07,745 --> 00:55:09,981 FOR EXAMPLE, AS SOON WHO'S ALSO 1317 00:55:09,981 --> 00:55:13,284 AUTISTIC I HAVE SEEN IN THE 1318 00:55:13,284 --> 00:55:14,185 AUTISTIC COMMUNITY WE'VE MOVED 1319 00:55:14,185 --> 00:55:18,256 BEYOND THE IDEA OF A 1320 00:55:18,256 --> 00:55:19,156 ONE-DIMENSIONAL SPECTRUM TO 1321 00:55:19,156 --> 00:55:24,428 UNDERSTANDING IT AS DIAL OF A 1322 00:55:24,428 --> 00:55:27,898 MIXER WHEREAS BEING LIKE A RADIO 1323 00:55:27,898 --> 00:55:29,700 DIAGRAM WHERE DIFFERENT 1324 00:55:29,700 --> 00:55:30,268 COMPONENTS ARE ASSESSED AT 1325 00:55:30,268 --> 00:55:31,002 DIFFERENT DEGREES. 1326 00:55:31,002 --> 00:55:34,238 I'D LIKE TO SEE THAT BE A MODEL 1327 00:55:34,238 --> 00:55:35,072 IN HOW WE DEVELOP ASSESSMENT 1328 00:55:35,072 --> 00:55:38,075 CRITERIA WHERE IT'S NOT JUST YOU 1329 00:55:38,075 --> 00:55:46,250 REACH THIS LEVEL ON CVI BUT YOU 1330 00:55:46,250 --> 00:55:50,554 RATE WITO TRULY CAPTURE THE 1331 00:55:50,554 --> 00:55:52,823 CHECKERED AND NON-LINEAR 1332 00:55:52,823 --> 00:55:54,258 EXPERIENCE AND RESPECT AND HONOR 1333 00:55:54,258 --> 00:55:54,892 THE COMPLEXITY OF THIS 1334 00:55:54,892 --> 00:56:01,866 NEUROLOGICAL DISABILITY. 1335 00:56:01,866 --> 00:56:05,836 I'D ALSO LOVE TO SEE US INCLUDE 1336 00:56:05,836 --> 00:56:06,704 NON-VISUAL CRITERIA IN OUR 1337 00:56:06,704 --> 00:56:12,777 MEASUREMENT BECAUSE NOT ONLY DO 1338 00:56:12,777 --> 00:56:14,979 WE -- DOES OUR BRAIN CHANGE IN 1339 00:56:14,979 --> 00:56:16,681 HOW WE PROCESS OR DON'T PROCESS 1340 00:56:16,681 --> 00:56:20,051 VISION BUT HOW WE PROCESS 1341 00:56:20,051 --> 00:56:25,056 TACTILE AND KINESTHETIC IF 1342 00:56:25,056 --> 00:56:28,292 SOMEONE SCORES HIGH AT THE SAME 1343 00:56:28,292 --> 00:56:30,828 LEVEL OR BEYOND WHAT IS NOTED IN 1344 00:56:30,828 --> 00:56:33,130 OCULAR BLIND POPULATIONS, FOR 1345 00:56:33,130 --> 00:56:36,100 EXAMPLE, THAT COULD BE A FLAG 1346 00:56:36,100 --> 00:56:38,002 THAT THERE'S A VISUAL PROCESSING 1347 00:56:38,002 --> 00:56:38,269 DEFICIT. 1348 00:56:38,269 --> 00:56:41,205 SO IT'S ABOUT A HOLISTIC VIEW, A 1349 00:56:41,205 --> 00:56:43,441 HEAD TO TOE APPROACH WHICH WILL 1350 00:56:43,441 --> 00:56:53,517 ALSO HELP US FIND THEORY 1351 00:56:53,517 --> 00:56:54,251 BOUNDARIES LIKE IN AUTISM OCCUR 1352 00:56:54,251 --> 00:56:55,519 AS SAID EARLIER. 1353 00:56:55,519 --> 00:56:58,255 I WANT TO REITERATE I'M SO 1354 00:56:58,255 --> 00:56:59,423 GRATEFUL THAT THIS RESEARCH IS 1355 00:56:59,423 --> 00:57:04,528 CONTINUING TO HAPPEN AND THAT WE 1356 00:57:04,528 --> 00:57:06,263 ARE AT A PLACE WHERE WE'RE GOING 1357 00:57:06,263 --> 00:57:09,700 TO BE CHANGING THE LIVES FOR SO 1358 00:57:09,700 --> 00:57:10,968 MANY FAMILIES AND AT THE SAME 1359 00:57:10,968 --> 00:57:12,536 TIME WE'RE AT THE CUTTING EDGE 1360 00:57:12,536 --> 00:57:13,571 AND THERE'S SO MUCH WORK AHEAD 1361 00:57:13,571 --> 00:57:14,004 OF US. 1362 00:57:14,004 --> 00:57:15,639 MY HOPE IS AS WE MOVE WITH THE 1363 00:57:15,639 --> 00:57:19,810 GOALS WE'LL BE ABLE TO GET THIS 1364 00:57:19,810 --> 00:57:22,079 INTO OPTOMETRY SCHOOLS, 1365 00:57:22,079 --> 00:57:25,282 OPHTHALMOLOGY SCHOOLS AND VISION 1366 00:57:25,282 --> 00:57:31,989 THERAPY SCHOOLS, NEURO OPTOMETRY 1367 00:57:31,989 --> 00:57:34,258 AND CVI WILL BE FOLDED IN THIS 1368 00:57:34,258 --> 00:57:36,360 CURRICULA AND AS WE BRIDGE THE 1369 00:57:36,360 --> 00:57:37,294 FIELDS WELL START TO BRIDGE THE 1370 00:57:37,294 --> 00:57:39,764 PARTS OF THE BODY THAT CREATE 1371 00:57:39,764 --> 00:57:42,199 THIGHS HOLISTIC AND 1372 00:57:42,199 --> 00:57:43,367 MULTI-DIMENSIONAL EXPERIENCES 1373 00:57:43,367 --> 00:57:47,037 LEADING US TO FORGET THE PUN, A 1374 00:57:47,037 --> 00:57:56,781 STEREO SCOPIC VIEW OF CVI. 1375 00:57:56,781 --> 00:58:01,185 >> THANK YOU, NAI. 1376 00:58:01,185 --> 00:58:03,154 OUR NEXT SPEAKER IS RACHEL 1377 00:58:03,154 --> 00:58:05,089 BENNETT DIRECTOR OF CVI NOW AND 1378 00:58:05,089 --> 00:58:07,091 PARENT ADVOCACY AND SUPPORT AT 1379 00:58:07,091 --> 00:58:13,998 THE CVI CENTER PERKINS SCHOOL 1380 00:58:13,998 --> 00:58:19,570 FOR TE -- THE BLIND AND IS ALSO 1381 00:58:19,570 --> 00:58:20,337 A CVI MOM AND WILL SHARE HER 1382 00:58:20,337 --> 00:58:30,548 PERSPECTIVE. 1383 00:58:36,520 --> 00:58:38,489 >> THANK YOU, NAI. 1384 00:58:38,489 --> 00:58:40,491 I'M SO GRATEFUL TO YOU AND WHAT 1385 00:58:40,491 --> 00:58:42,259 YOU'RE DOING TO CENTER THE LIVED 1386 00:58:42,259 --> 00:58:42,960 EXPERIENCES OF PEOPLE WITH CVI. 1387 00:58:42,960 --> 00:58:46,263 I APPRECIATE YOU. 1388 00:58:46,263 --> 00:58:47,698 I AM RACHEL BENNET. 1389 00:58:47,698 --> 00:58:52,136 I'M A TALL WHITE WOMAN WITH DARK 1390 00:58:52,136 --> 00:58:54,238 BROWN HAIR, I BLOW DRIED IT THIS 1391 00:58:54,238 --> 00:58:56,006 MORNING AND A DARK GREEN TOP. 1392 00:58:56,006 --> 00:58:57,775 I'M HUMBLED AND HONORED TO BE 1393 00:58:57,775 --> 00:59:01,946 HERE TODAY TO BE PART OF THIS 1394 00:59:01,946 --> 00:59:03,547 WATERSHED MOMENT FOR THE CVI 1395 00:59:03,547 --> 00:59:03,814 COMMUNITY. 1396 00:59:03,814 --> 00:59:08,586 I'M A CVI PARENT AND DIRECTOR OF 1397 00:59:08,586 --> 00:59:12,089 CVI PARENT ADVOCACY SUPPORT AT 1398 00:59:12,089 --> 00:59:16,760 THE PERKINS SCHOOL FOR THE 1399 00:59:16,760 --> 00:59:16,961 BLIND. 1400 00:59:16,961 --> 00:59:18,028 I'LL SHARE MY SON DIAGNOSIS 1401 00:59:18,028 --> 00:59:19,296 JOURNEY AND CONSIDERATIONS FOR 1402 00:59:19,296 --> 00:59:19,997 THE WORK. 1403 00:59:19,997 --> 00:59:21,432 ONE OF THE REASONS WE'RE HERE 1404 00:59:21,432 --> 00:59:24,568 TODAY IS BECAUSE OF ALL THE CVI 1405 00:59:24,568 --> 00:59:26,637 CAREGIVERS ON THE FRONT LINES 1406 00:59:26,637 --> 00:59:29,707 SPEAKING UP, NEVER GIVING UP AND 1407 00:59:29,707 --> 00:59:33,277 FIGHTING FOR OUR KID'S RIGHT FOR 1408 00:59:33,277 --> 00:59:33,944 LIFE-CHANGING ACCESS. 1409 00:59:33,944 --> 00:59:35,980 AND BEFORE I SHARE MY SON'S 1410 00:59:35,980 --> 00:59:36,881 MEDICAL EXPERIENCE I WANT TO 1411 00:59:36,881 --> 00:59:39,250 INTRODUCE YOU TO HENRY. 1412 00:59:39,250 --> 00:59:42,253 HE'S 11 YEARS OLD AND SOMEHOW 1413 00:59:42,253 --> 00:59:44,388 FIGURES OUT HOW TO WORK HIS WAY 1414 00:59:44,388 --> 00:59:46,891 INTO EVERYBODY'S HEART HE MEETS 1415 00:59:46,891 --> 00:59:47,958 AND LOVE RIDING THE 1416 00:59:47,958 --> 00:59:48,659 TRANSPORTATION SYSTEM IN BOSTON 1417 00:59:48,659 --> 00:59:53,297 AND MY HUSBAND AND I TAKE TURNS 1418 00:59:53,297 --> 00:59:54,265 RIDING WITH HIM EVERY WEEKEND 1419 00:59:54,265 --> 00:59:57,768 AND KNOWS ALL THE STOPS ON 1420 00:59:57,768 --> 01:00:00,170 MULTIPLE LINES AND OUR FAVORITE 1421 01:00:00,170 --> 01:00:01,805 THING TO DO WITH THEM BECAUSE WE 1422 01:00:01,805 --> 01:00:04,308 GET TO SEE HIM LIVE IN HIS FULL 1423 01:00:04,308 --> 01:00:05,709 JOY AND PURPOSE AND PASSION TO 1424 01:00:05,709 --> 01:00:07,845 FLEX HIS SKILLS AND TALENTS. 1425 01:00:07,845 --> 01:00:10,781 IT'S A CHALLENGE OF A LIFE TIME 1426 01:00:10,781 --> 01:00:12,983 TO RAISE A CHILD WITH DISABILITY 1427 01:00:12,983 --> 01:00:17,288 IN A SOCIETY THAT CHOOSES NOT TO 1428 01:00:17,288 --> 01:00:20,190 BE FULLY ACTIVE AND ABLISM IS 1429 01:00:20,190 --> 01:00:21,158 INSIDIOUS. 1430 01:00:21,158 --> 01:00:22,560 AT THE CORE OF THE CAREGIVER 1431 01:00:22,560 --> 01:00:25,829 EXPERIENCE AT EVERY MOMENT AND 1432 01:00:25,829 --> 01:00:27,431 INTERACTION ON EVERY TURN THIS 1433 01:00:27,431 --> 01:00:29,600 UNCERTAIN AND SCARY JOURNEY IS 1434 01:00:29,600 --> 01:00:31,402 WE HAVE TO PROVE OUR CHILD IS 1435 01:00:31,402 --> 01:00:35,539 WORTHY AND ENOUGH. 1436 01:00:35,539 --> 01:00:37,007 AND FOR ME AS A DISABILITY 1437 01:00:37,007 --> 01:00:38,242 PARENT IT'S THE MOST 1438 01:00:38,242 --> 01:00:47,618 HEARTBREAKING THING I HAVE TO DO 1439 01:00:47,618 --> 01:00:51,622 WHAT I WANT IT SHARE IS MY SON'S 1440 01:00:51,622 --> 01:00:52,289 DIAGNOSIS JOURNEY. 1441 01:00:52,289 --> 01:00:54,692 I WON'T TALK ABOUT EVERY DETAIL 1442 01:00:54,692 --> 01:00:55,859 BECAUSE THERE'S A LOT OF THEM. 1443 01:00:55,859 --> 01:00:57,861 HE WAS MISSED UNTIL HE WAS FIVE 1444 01:00:57,861 --> 01:00:58,262 AND A HALF. 1445 01:00:58,262 --> 01:01:00,064 HERE'S A TIME LINE OF HIS 1446 01:01:00,064 --> 01:01:00,698 DIAGNOSIS JOURNEY. 1447 01:01:00,698 --> 01:01:02,933 FOR THE FIRST THREE YEARS OF HIS 1448 01:01:02,933 --> 01:01:05,202 LIFE HE WAS NOT MEETING 1449 01:01:05,202 --> 01:01:05,536 MILESTONES. 1450 01:01:05,536 --> 01:01:07,104 AT THREE MONTHS WE NOTICED HIS 1451 01:01:07,104 --> 01:01:08,706 EYES WERE SHAKING AND THIS 1452 01:01:08,706 --> 01:01:10,107 STARTED THE YEARS OF NAVIGATING 1453 01:01:10,107 --> 01:01:12,042 ALL THE MEDICAL PROVIDERS AND 1454 01:01:12,042 --> 01:01:14,078 SPECIALISTS AND MRIs AND NEW 1455 01:01:14,078 --> 01:01:16,914 DIAGNOSES ALONG WITH SOME REALLY 1456 01:01:16,914 --> 01:01:17,948 DIFFICULT HOSPITAL STAYS AND 1457 01:01:17,948 --> 01:01:19,350 E.R. VISITS. 1458 01:01:19,350 --> 01:01:21,352 WE WERE LIVING IN MARYLAND CLEZ 1459 01:01:21,352 --> 01:01:23,120 TO WHERE WE ARE NOW AT THE TIME 1460 01:01:23,120 --> 01:01:26,023 CLOSE TO WHERE WE ARE NOW AND 1461 01:01:26,023 --> 01:01:27,191 HENRY CAME TO THE NATIONAL EYE 1462 01:01:27,191 --> 01:01:28,492 INSTITUTE AT ONE AND A HALF TO 1463 01:01:28,492 --> 01:01:30,194 BE HERE IN THE ROOM 10 YEARS 1464 01:01:30,194 --> 01:01:33,931 LATER IS A FULL CIRCLE MOMENT. 1465 01:01:33,931 --> 01:01:37,568 HE WAS DIAGNOSED WITH OPTIC 1466 01:01:37,568 --> 01:01:40,371 NERVE HYPOPLASIA AND HAS PALE 1467 01:01:40,371 --> 01:01:45,342 SMALL OPTIC NERVES AND DELAYED 1468 01:01:45,342 --> 01:01:47,611 THE MATURATION AND THE GENE 1469 01:01:47,611 --> 01:01:50,314 RESPONSIBLE FOR SENDING NEURONS 1470 01:01:50,314 --> 01:01:51,949 TO THEIR FINAL POSITION DURING 1471 01:01:51,949 --> 01:01:53,684 FETAL BRAIN DEVELOPMENT. 1472 01:01:53,684 --> 01:01:56,487 BETWEEN NEI AND THE REGULAR 1473 01:01:56,487 --> 01:01:58,155 OPHTHALMOLOGISTS HE HAD VISITS 1474 01:01:58,155 --> 01:02:01,358 TWO TO THREE TIMES PER YEAR. 1475 01:02:01,358 --> 01:02:04,261 WE KNEW HE WASN'T USING HIS 1476 01:02:04,261 --> 01:02:05,329 VISION NORMALLY. 1477 01:02:05,329 --> 01:02:06,130 SOMETHING WASN'T RIGHT. 1478 01:02:06,130 --> 01:02:07,931 HE WASN'T VISUALLY CURIOUS OR 1479 01:02:07,931 --> 01:02:10,000 INTERESTED IN TOYS, BOOKS AND 1480 01:02:10,000 --> 01:02:12,236 STRUGGLED AT THE PLAYGROUND. 1481 01:02:12,236 --> 01:02:17,341 HE WAS ALWAYS UPSET AND HAVING 1482 01:02:17,341 --> 01:02:17,841 ME 1483 01:02:17,841 --> 01:02:20,044 MELTDOWNS AND WE COULDN'T BRING 1484 01:02:20,044 --> 01:02:21,779 HIM ANYWHERE AND WE COULDN'T 1485 01:02:21,779 --> 01:02:23,814 FIGURE HIM OUT. 1486 01:02:23,814 --> 01:02:27,084 HIS REGULAR OPHTHALMOLOGIST SAID 1487 01:02:27,084 --> 01:02:29,353 IT'S IN THE HIS VISION. 1488 01:02:29,353 --> 01:02:30,688 HE HAS SERIOUS ATTENTION 1489 01:02:30,688 --> 01:02:31,121 PROBLEMS. 1490 01:02:31,121 --> 01:02:34,258 TO THIS DAY I HAVE NOT FORGIVEN 1491 01:02:34,258 --> 01:02:35,893 MYSELF FOR BELIEVING HER. 1492 01:02:35,893 --> 01:02:39,630 FOR LETTING HER DISMISS HENRY'S 1493 01:02:39,630 --> 01:02:41,765 WORTH TO BE BELIEVED AND WORTH 1494 01:02:41,765 --> 01:02:44,668 TO DESERVE CURIOSITY AND FURTHER 1495 01:02:44,668 --> 01:02:44,968 EVALUATION. 1496 01:02:44,968 --> 01:02:46,236 LUCKILY A SPECIAL EDUCATOR IN 1497 01:02:46,236 --> 01:02:48,238 HIS PRESCHOOL PROGRAM NOTICED HE 1498 01:02:48,238 --> 01:02:52,276 WASN'T USING HIS VISUAL NORMALLY 1499 01:02:52,276 --> 01:02:59,750 AND BROUGHT IN A TBI TO OBSERVE 1500 01:02:59,750 --> 01:03:03,954 HIM AND HENRY GOT A BRIEF 1501 01:03:03,954 --> 01:03:08,058 ASSESSMENT FROM THE MARYLAND 1502 01:03:08,058 --> 01:03:12,396 DEAF/BLIND PROJECT WHERE WE WERE 1503 01:03:12,396 --> 01:03:14,598 ENCOURAGED TO TAKE THE REPORT 1504 01:03:14,598 --> 01:03:16,400 FOR ASSESSMENT AND I TOOK TIME 1505 01:03:16,400 --> 01:03:17,968 TO PROCESS AND THEN DOVE HEAD 1506 01:03:17,968 --> 01:03:19,303 FIRST IN THE LITERATURE, 1507 01:03:19,303 --> 01:03:21,238 RESEARCH AND ONLINE LEARNING AND 1508 01:03:21,238 --> 01:03:22,806 FOUND AN INCREDIBLE CVI PARENT 1509 01:03:22,806 --> 01:03:23,874 COMMUNITY AND WAS FINALLY ON THE 1510 01:03:23,874 --> 01:03:27,211 PATH TO KNOWING MY SON. 1511 01:03:27,211 --> 01:03:29,246 TO KNOWING WHAT ALL THE 1512 01:03:29,246 --> 01:03:30,547 BEHAVIORS WERE COMMUNICATING, 1513 01:03:30,547 --> 01:03:32,116 HOW HARD IT WAS TO EXIST IN A 1514 01:03:32,116 --> 01:03:34,051 WORLD NOT ACCESSIBLE FOR HIM AND 1515 01:03:34,051 --> 01:03:36,687 A WORLD WHERE NO ONE KNEW HE WAS 1516 01:03:36,687 --> 01:03:38,956 TRULY ON THE BLINDNESS SPECTRUM 1517 01:03:38,956 --> 01:03:40,557 AND COULD FINALLY BE THE PARENT 1518 01:03:40,557 --> 01:03:45,295 AND ADVOCATE THAT HE NEEDED. 1519 01:03:45,295 --> 01:03:51,802 SINCE THEN RECEIVED CHRONIC 1520 01:03:51,802 --> 01:03:54,071 HEALTH CONDITIONS. 1521 01:03:54,071 --> 01:03:58,242 HE IS JUST ONE PATIENT'S JOURNEY 1522 01:03:58,242 --> 01:04:01,378 AND I SHARED A FEW SNIPPET S OF 1523 01:04:01,378 --> 01:04:03,113 OTHER DIAGNOSIS JOURNEYS. 1524 01:04:03,113 --> 01:04:06,817 MEET LOGAN AND LG. 1525 01:04:06,817 --> 01:04:10,254 BOTH HAVE CEREBRAL PALSY AND ONE 1526 01:04:10,254 --> 01:04:14,057 MISSED THE OPPORTUNITY TO GET EI 1527 01:04:14,057 --> 01:04:17,761 VISION SERVICES AND LG IS A 1528 01:04:17,761 --> 01:04:19,429 MIDDLE SCHOOLER AND INCREDIBLE 1529 01:04:19,429 --> 01:04:19,696 ADVOCATE. 1530 01:04:19,696 --> 01:04:21,932 WE HAVE TO BE AT THE POINT WITH 1531 01:04:21,932 --> 01:04:25,269 THE CP DIAGNOSIS WE CAN HAVE A 1532 01:04:25,269 --> 01:04:25,636 SCREENER. 1533 01:04:25,636 --> 01:04:28,839 JUST PUTTING IT OUT THERE. 1534 01:04:28,839 --> 01:04:30,274 EMMA HAS DOWN SYNDROME AND WAS 1535 01:04:30,274 --> 01:04:33,977 NOT DIAGNOSED WITH CVI UNTIL 15 1536 01:04:33,977 --> 01:04:36,313 1/2 MAINLY DUE TO DIAGNOSTIC 1537 01:04:36,313 --> 01:04:36,647 OVERSHADOWING. 1538 01:04:36,647 --> 01:04:40,350 I HEARD FROM SO MANY PARENTS 1539 01:04:40,350 --> 01:04:41,785 ACROSS THE COUNTRY WHERE THEIR 1540 01:04:41,785 --> 01:04:44,321 TRAITS WERE ATTRIBUTED TO OTHER 1541 01:04:44,321 --> 01:04:46,390 CONDITIONS AND MANY DIDN'T GET 1542 01:04:46,390 --> 01:04:49,226 DIAGNOSIS UNTIL THEIR TEEN AGE 1543 01:04:49,226 --> 01:04:49,426 YEARS. 1544 01:04:49,426 --> 01:04:51,328 MEET ZEKE HE STRUGGLED WITH 1545 01:04:51,328 --> 01:04:52,963 VISUAL ACCESS AND DOCTORS 1546 01:04:52,963 --> 01:04:56,867 CONTINUED TO DISMISS HIS MOM'S 1547 01:04:56,867 --> 01:04:57,134 CONCERNS. 1548 01:04:57,134 --> 01:05:00,103 AND SAVANNAH GOT A DIAGNOSIS AT 1549 01:05:00,103 --> 01:05:04,908 SIX MONTHS AND NO OTHER 1550 01:05:04,908 --> 01:05:07,244 INFORMATION FROM ANOTHER 1551 01:05:07,244 --> 01:05:13,483 PROVIDER AND THIS CHILD HAD CVI 1552 01:05:13,483 --> 01:05:16,553 PUT BACK ON THE RADAR AT 4 AND 1553 01:05:16,553 --> 01:05:18,121 WE KNOW THERE'S SO MUCH WE CAN 1554 01:05:18,121 --> 01:05:19,957 DO TO PROVIDE ACCESS TO LEARNING 1555 01:05:19,957 --> 01:05:25,963 AND THE WORLD FOR THE KIDS WITH 1556 01:05:25,963 --> 01:05:26,129 CVI. 1557 01:05:26,129 --> 01:05:28,265 THE TRUE OF THE STATE OF THE 1558 01:05:28,265 --> 01:05:29,733 CAREGIVER EXPERIENCE IS THE 1559 01:05:29,733 --> 01:05:31,201 MAJORITY OF CVI CAREGIVERS DON'T 1560 01:05:31,201 --> 01:05:33,904 KNOW THEIR CHILD HAS CVI. 1561 01:05:33,904 --> 01:05:36,173 ACCORDING TO NEW RESEARCH BY THE 1562 01:05:36,173 --> 01:05:39,843 CENTER OF PERKINS USING MEDICAL 1563 01:05:39,843 --> 01:05:41,845 CLAIMS DATA WE FOUND LESS THAN 1564 01:05:41,845 --> 01:05:43,180 25% OF KIDS WITH CVI IN THE 1565 01:05:43,180 --> 01:05:45,082 U.S. ARE DIAGNOSED. 1566 01:05:45,082 --> 01:05:47,651 CAREGIVERS HAVE TO TRAVEL LONG 1567 01:05:47,651 --> 01:05:49,653 DISTANCES TO FIND MEDICAL 1568 01:05:49,653 --> 01:05:50,954 PROVIDERS WHO CAN EVALUATE CVI 1569 01:05:50,954 --> 01:05:52,556 AND IT'S HARD FOR CAREGIVERS TO 1570 01:05:52,556 --> 01:05:54,157 KNOW WHAT TO DO NEXT. 1571 01:05:54,157 --> 01:05:56,159 FOR MANY OF US THIS IS THE FIRST 1572 01:05:56,159 --> 01:05:57,194 TIME RAISING A CHILD WITH 1573 01:05:57,194 --> 01:06:01,231 DISABILITIES AND OUR KID IS THE 1574 01:06:01,231 --> 01:06:04,067 FIRST PERSON WE'RE CLOSE WITH 1575 01:06:04,067 --> 01:06:05,235 BLINDNESS AND LOW VISION. 1576 01:06:05,235 --> 01:06:05,969 WE NEED HELP. 1577 01:06:05,969 --> 01:06:07,404 I WANT TO SHARE WHAT IS WORKING 1578 01:06:07,404 --> 01:06:08,572 FOR HENRY NOW. 1579 01:06:08,572 --> 01:06:09,873 WE MOVED TO THE BOSTON AREA 1580 01:06:09,873 --> 01:06:11,675 SEVERAL YEARS AGO BECAUSE I 1581 01:06:11,675 --> 01:06:12,843 LEARNED A HARD WAY THE 1582 01:06:12,843 --> 01:06:14,811 EDUCATIONAL SYSTEM HAS A LONG 1583 01:06:14,811 --> 01:06:16,446 WAY TO GO TO SUPPORT KIDS WITH 1584 01:06:16,446 --> 01:06:16,613 CVI. 1585 01:06:16,613 --> 01:06:20,017 I'VE HAD TIME TO DEVELOP MY 1586 01:06:20,017 --> 01:06:21,184 KNOWLEDGE AND ADVOCACY AND IT'S 1587 01:06:21,184 --> 01:06:23,220 WHAT SO MANY OF US HAVE TO DO. 1588 01:06:23,220 --> 01:06:26,056 WE HAVE TO BUILD AN ENTIRE SKILL 1589 01:06:26,056 --> 01:06:31,929 SET TO FIGHT FOR OUR KIDS. 1590 01:06:31,929 --> 01:06:33,430 HENRY IS CONSISTENT AND THEY 1591 01:06:33,430 --> 01:06:35,799 HAVE THE BEST POSSIBLE 1592 01:06:35,799 --> 01:06:40,637 ENVIRONMENT FOR HIM AND HE IS 1593 01:06:40,637 --> 01:06:43,240 ABLE TO ACCESS HIS LEARNING HE 1594 01:06:43,240 --> 01:06:44,708 HAS A STRONG TBI AND USES 1595 01:06:44,708 --> 01:06:46,576 BRAILLE AND PRINT AND ON HIS OWN 1596 01:06:46,576 --> 01:06:49,046 PATH TO BECOME A READER, WRITER 1597 01:06:49,046 --> 01:06:51,114 AND PROBLEM SOLVER. 1598 01:06:51,114 --> 01:06:53,684 IT'S NOT EASY BUT HE'S DOING IT. 1599 01:06:53,684 --> 01:06:57,521 TO CLOSE, I WANT TO CONSIDER HOW 1600 01:06:57,521 --> 01:06:58,522 TO EMPOWER FAMILY. 1601 01:06:58,522 --> 01:07:00,791 THE MEDICAL COMMUNITY HOLDS 1602 01:07:00,791 --> 01:07:01,992 WEIGHT AND CAN HELP FAMILIES 1603 01:07:01,992 --> 01:07:03,760 TAKE THE RIGHT NEXT STEP FOR 1604 01:07:03,760 --> 01:07:05,262 THEIR KID. 1605 01:07:05,262 --> 01:07:08,398 INCLUDING REFERRAL TO EARLY 1606 01:07:08,398 --> 01:07:10,834 INVENTION AND LEGAL BLINDNESS 1607 01:07:10,834 --> 01:07:11,969 DETERMINATION AND EVALUATION AND 1608 01:07:11,969 --> 01:07:13,470 CVI ASSESSMENTS AND LEARNING THE 1609 01:07:13,470 --> 01:07:15,939 ASSESSMENTS BY TEACHING THE 1610 01:07:15,939 --> 01:07:18,275 VISUALLY IMPAIRED AND MOBILITY 1611 01:07:18,275 --> 01:07:20,110 AND PROVIDING KEY OBSERVATIONS 1612 01:07:20,110 --> 01:07:22,245 FROM THE EXAM, SUPPORTS AND 1613 01:07:22,245 --> 01:07:25,415 RESOURCE TO LEARN MORE. 1614 01:07:25,415 --> 01:07:27,050 PATIENT CARE IS EMPOWERING 1615 01:07:27,050 --> 01:07:28,051 CAREGIVERS. 1616 01:07:28,051 --> 01:07:32,389 PATIENT CARE IS EMPOWERING 1617 01:07:32,389 --> 01:07:32,689 CAREGIVERS. 1618 01:07:32,689 --> 01:07:35,025 AS WE CONSIDER THIS CRITICAL 1619 01:07:35,025 --> 01:07:36,994 WORK WE HAVE TO INCLUDE THE 1620 01:07:36,994 --> 01:07:38,795 EXPERIENCES AND PATIENT 1621 01:07:38,795 --> 01:07:40,030 PROFILES. 1622 01:07:40,030 --> 01:07:41,398 SO ALL PEOPLE WITH CVI BELIEVED 1623 01:07:41,398 --> 01:07:43,533 THE DIAGNOSIS IS A BIG DEAL AND 1624 01:07:43,533 --> 01:07:46,536 CAN HAVE A DIRECT IMPACT ON THE 1625 01:07:46,536 --> 01:07:48,939 ABILITY OF THE PATIENT TO ACCESS 1626 01:07:48,939 --> 01:07:50,140 SERVICES, TOOLS, ADAPTIVE 1627 01:07:50,140 --> 01:07:51,908 MATERIALS AND SPECIAL 1628 01:07:51,908 --> 01:07:52,609 INTERVENTIONS AND INSTRUCTION 1629 01:07:52,609 --> 01:07:56,413 ALL TOO IMPROVE QUALITY OF LIFE. 1630 01:07:56,413 --> 01:08:00,650 A QUOTE FROM A CVI PATIENT WHAT 1631 01:08:00,650 --> 01:08:01,985 THE DIAGNOSIS MEANT I'LL READ A 1632 01:08:01,985 --> 01:08:02,152 BIT. 1633 01:08:02,152 --> 01:08:04,654 ON THAT DAY I REALIZED MY CHILD 1634 01:08:04,654 --> 01:08:06,256 HAS A LIFE LONG DISABILITY 1635 01:08:06,256 --> 01:08:07,157 FOREVER IMPACTING EVERYTHING SHE 1636 01:08:07,157 --> 01:08:08,859 DID IN HER DAILY LIFE. 1637 01:08:08,859 --> 01:08:10,260 THE DIAGNOSIS CHANGED EVERYTHING 1638 01:08:10,260 --> 01:08:13,897 ABOUT OUR ACCESS TO THE WORLD, 1639 01:08:13,897 --> 01:08:18,168 EDUCATION AND FUTURE EMPLOYMENT. 1640 01:08:18,168 --> 01:08:19,569 EVERY PERSON WITH CVI HAS A 1641 01:08:19,569 --> 01:08:21,271 RIGHT TO DIAGNOSIS AND 1642 01:08:21,271 --> 01:08:21,571 PROGRAMMING. 1643 01:08:21,571 --> 01:08:23,573 IN A FUTURE WHERE THEY DEFINE 1644 01:08:23,573 --> 01:08:26,043 THEIR OWN SUCCESS AND LIVE WITH 1645 01:08:26,043 --> 01:08:28,478 AGENCY, JOY AND BELONG. 1646 01:08:28,478 --> 01:08:29,146 THANK YOU. 1647 01:08:29,146 --> 01:08:31,681 THANK YOU ALL IN THE ROOM AND TO 1648 01:08:31,681 --> 01:08:33,417 THE NIH FOR STEPPING UP AND 1649 01:08:33,417 --> 01:08:35,018 SHOWING THE WORLD OUR KIDS AND 1650 01:08:35,018 --> 01:08:35,685 PEOPLE WITH CVI MATTER AND ARE WORTHY. 1651 01:08:35,685 --> 01:08:35,919 THANK YOU. 1652 01:08:35,919 --> 01:08:46,096 1653 01:08:50,076 --> 01:08:53,096 WE CAN HAVE A FIVE-MINUTE BREAK AND COME BACK AT 10:45. 1654 01:08:57,100 --> 01:08:59,923 WE'RE SHIFTING GEARS TALKING 1655 01:08:59,923 --> 01:09:10,367 ABOUT BUILDING A REGISTRY. 1656 01:09:14,938 --> 01:09:18,308 THE NEXT SPEAKER IS DR. STACY 1657 01:09:18,308 --> 01:09:19,543 PINELES A PROFESSOR OF 1658 01:09:19,543 --> 01:09:23,947 OPHTHALMOLOGY OF UNIVERSITY OF 1659 01:09:23,947 --> 01:09:26,116 LOS ANGELES AND SHE IS ONE OF MY 1660 01:09:26,116 --> 01:09:26,850 MENTORS AND FAVORITE PEOPLE IN 1661 01:09:26,850 --> 01:09:27,117 THE WORLD. 1662 01:09:27,117 --> 01:09:30,320 >> THANK YOU. 1663 01:09:30,320 --> 01:09:32,456 THANK YOU SO MUCH. 1664 01:09:32,456 --> 01:09:33,690 I HAVE ANOTHER SHORT BROWN 1665 01:09:33,690 --> 01:09:34,324 HAIRED WOMAN HERE. 1666 01:09:34,324 --> 01:09:36,093 I WAS ASKED TO TALK ABOUT THE 1667 01:09:36,093 --> 01:09:40,997 IMPACT OF DIAGNOSTIC CRITERIA ON 1668 01:09:40,997 --> 01:09:41,598 FUTURE CLINICAL TRIAL. 1669 01:09:41,598 --> 01:09:44,334 I DON'T KNOW I CAN FILL 10 1670 01:09:44,334 --> 01:09:46,303 MINUTES ON THAT BECAUSE I THINK 1671 01:09:46,303 --> 01:09:54,311 WE ALL KNOW THAT WE NEED 1672 01:09:54,311 --> 01:09:56,012 DIAGNOSTIC CRITERIA FOR CVI AND 1673 01:09:56,012 --> 01:09:59,316 A WANT TO TELL YOU ABOUT PEDIC 1674 01:09:59,316 --> 01:10:02,385 DR. CHANG MENTIONED IT HAS A 1675 01:10:02,385 --> 01:10:03,754 SPECIAL INTEREST IN CVI TOO. 1676 01:10:03,754 --> 01:10:04,621 I WANT EVERYBODY IN THE 1677 01:10:04,621 --> 01:10:06,056 COMMUNITY TO BE AWARE OF THE 1678 01:10:06,056 --> 01:10:08,125 GROUP AND WORK WE'RE GOING TO BE 1679 01:10:08,125 --> 01:10:10,093 DOING WITH CVI AS WELL. 1680 01:10:10,093 --> 01:10:13,063 MANY OF YOU IN THE AUDIENCE ARE 1681 01:10:13,063 --> 01:10:15,599 FAMILIAR WITH PEDIC. 1682 01:10:15,599 --> 01:10:18,301 IT'S A NEI FUNDED GROUP THAT 1683 01:10:18,301 --> 01:10:20,103 RUNS CLINICAL TRIALS IN PETE 1684 01:10:20,103 --> 01:10:22,873 TRICK OPHTHALMOLOGY IN OPTOMETRY 1685 01:10:22,873 --> 01:10:25,776 AND MADE OF OPTOMETRISTS AND 1686 01:10:25,776 --> 01:10:28,345 OPHTHALMOLOGISTS WORKING 1687 01:10:28,345 --> 01:10:31,281 TOGETHER AND THERE'S ABOUT 180 1688 01:10:31,281 --> 01:10:39,790 SITES IN NEW YORK -- NORTH 1689 01:10:39,790 --> 01:10:40,857 AMERICA AND WITH OUR RECENT 1690 01:10:40,857 --> 01:10:42,559 FUNDING CYCLE WE DECIDED WE 1691 01:10:42,559 --> 01:10:45,128 WANTED TO FOCUS ON SOME RARER 1692 01:10:45,128 --> 01:10:45,395 DISEASES. 1693 01:10:45,395 --> 01:10:51,902 AND WE CREATED GROUPS WITHIN 1694 01:10:51,902 --> 01:10:54,304 PEDIG WITH EXPERTS INSIDE AND 1695 01:10:54,304 --> 01:10:56,640 OUTSIDE OF PEDIG AND THESE ARE 1696 01:10:56,640 --> 01:10:58,308 GROUPS WE CREATED AND I 1697 01:10:58,308 --> 01:10:59,142 HIGHLIGHTED NUMBER 6 BECAUSE WE 1698 01:10:59,142 --> 01:11:04,181 HAVE A SPECIAL GROUP WORK ON 1699 01:11:04,181 --> 01:11:04,848 NEUROOPTO METRIC CONDITIONS SUCH 1700 01:11:04,848 --> 01:11:05,081 AS CVI. 1701 01:11:05,081 --> 01:11:10,253 I WANT TO SHOW YOU THE LIST OF 1702 01:11:10,253 --> 01:11:16,827 PEOPLE WORKING ON PEDIG 1703 01:11:16,827 --> 01:11:19,729 NEURO-OPHTHALMOLOGY AND OUR 1704 01:11:19,729 --> 01:11:22,732 PLANS FOR CVI ARE GOING TO BE 1705 01:11:22,732 --> 01:11:26,102 PARALLEL AND HOPEFULLY 1706 01:11:26,102 --> 01:11:28,071 COMPLEMENTARY WITH THE NEI IN 1707 01:11:28,071 --> 01:11:32,108 THAT WE'D LIKE TO DO A 1708 01:11:32,108 --> 01:11:32,976 PROSPECTIVE STUDY. 1709 01:11:32,976 --> 01:11:34,644 A LITTLE DIFFERENT THAN A STUDY 1710 01:11:34,644 --> 01:11:36,146 COLLECTING STANDARDIZED DATA 1711 01:11:36,146 --> 01:11:40,684 RELATED TO SILVER ACUITY AND 1712 01:11:40,684 --> 01:11:40,984 OUTCOMES. 1713 01:11:40,984 --> 01:11:45,055 WE'RE WORKING ON DEFINITIONS AND 1714 01:11:45,055 --> 01:11:46,323 WE'LL BE SURE TO REPORT BACK AND 1715 01:11:46,323 --> 01:11:48,358 COME TO ALL OF YOU FOR IDEAS. 1716 01:11:48,358 --> 01:11:50,327 AND JUST TO GET BACK TO THE 1717 01:11:50,327 --> 01:11:51,361 ORIGINAL POINT OF THIS TALK 1718 01:11:51,361 --> 01:11:52,896 WHICH IS WHY WE NEED 1719 01:11:52,896 --> 01:11:56,099 STANDARDIZED DEFINITIONS, WE 1720 01:11:56,099 --> 01:11:57,267 KNOW EVIDENCE-BASED HEALTH CARE 1721 01:11:57,267 --> 01:12:02,305 IS INFORMED BY RESULT OF OUR CTs 1722 01:12:02,305 --> 01:12:04,841 AND WHEN TRIAL OUTCOMES AREN'T 1723 01:12:04,841 --> 01:12:07,577 MEASURED CLEARLY IN 1724 01:12:07,577 --> 01:12:08,545 PUBLICATIONS, OUR DECISION 1725 01:12:08,545 --> 01:12:10,313 MAKING AS DOCTORS AND THERAPISTS 1726 01:12:10,313 --> 01:12:13,316 AND PARENTS CAN BE IMPEDED. 1727 01:12:13,316 --> 01:12:16,586 SO STANDARDS CAN HELP FACILITATE 1728 01:12:16,586 --> 01:12:17,721 THE POOLING OF DATA FROM 1729 01:12:17,721 --> 01:12:18,955 DIFFERENT SOURCES. 1730 01:12:18,955 --> 01:12:20,123 IF WE HAVE ONE CVI STUDY HERE 1731 01:12:20,123 --> 01:12:22,959 AND THERE AND IF WE ALL USE 1732 01:12:22,959 --> 01:12:24,895 STANDARDIZED DEFINITIONS AND 1733 01:12:24,895 --> 01:12:26,730 OUTCOMES WE CAN POOL OUR DATA 1734 01:12:26,730 --> 01:12:29,032 AND CAPITALIZE ON THE SIZE OF 1735 01:12:29,032 --> 01:12:30,267 OUR INTEREST GROUPS WORKING 1736 01:12:30,267 --> 01:12:31,034 TOGETHER. 1737 01:12:31,034 --> 01:12:33,570 AND ALSO BY HARMONIZING 1738 01:12:33,570 --> 01:12:34,638 VOCABULARIES AND STANDARDS IT 1739 01:12:34,638 --> 01:12:38,909 CAN HELP US ALL SPEAK THE SAME 1740 01:12:38,909 --> 01:12:39,175 LANGUAGE. 1741 01:12:39,175 --> 01:12:43,146 THESE ARE OBVIOUS THINGS BUT 1742 01:12:43,146 --> 01:12:45,515 WANTED TO ANSWER THE QUESTION 1743 01:12:45,515 --> 01:12:45,715 ASKED. 1744 01:12:45,715 --> 01:12:47,183 STANDARDIZATION CAN IMPROVE 1745 01:12:47,183 --> 01:12:48,184 RESEARCH THROUGH IMPROVING 1746 01:12:48,184 --> 01:12:49,753 QUALITY AND GIVING US BETTER 1747 01:12:49,753 --> 01:12:55,091 INTEGRATION AND REUSABILITY AND 1748 01:12:55,091 --> 01:12:57,994 FACILITATION WITH PARTNERS AND 1749 01:12:57,994 --> 01:12:59,296 USE SOFTWARE TOOLS WITH 1750 01:12:59,296 --> 01:13:01,531 DEFINITIONS IN OUR ELECTRONIC 1751 01:13:01,531 --> 01:13:03,066 MEDICAL RECORDS FOR EXAMPLE THEN 1752 01:13:03,066 --> 01:13:06,836 WE CAN START TO USE SOFTWARE TO 1753 01:13:06,836 --> 01:13:08,104 ANALYZE WHAT WE'RE DOING. 1754 01:13:08,104 --> 01:13:10,307 COLLECTION OF CLINICAL RESEARCH 1755 01:13:10,307 --> 01:13:11,741 DATA USING PRE-DETERMINED 1756 01:13:11,741 --> 01:13:14,077 STANDARDS IS PREFERABLE TO 1757 01:13:14,077 --> 01:13:18,715 CONVERTING THINGS POST-HOC IF 1758 01:13:18,715 --> 01:13:20,383 YOU WANT TO COLLABORATE IT'S 1759 01:13:20,383 --> 01:13:24,087 BETTER TO PREDEFINE WHAT YOU'RE 1760 01:13:24,087 --> 01:13:24,955 DOING. 1761 01:13:24,955 --> 01:13:26,856 ALL THIS DEVELOPMENT REQUIRES A 1762 01:13:26,856 --> 01:13:27,490 COLLABORATIVE EFFORT WHICH WE'RE 1763 01:13:27,490 --> 01:13:29,526 DOING HERE TODAY. 1764 01:13:29,526 --> 01:13:31,661 AND I'D LIKE TO END JUST BY 1765 01:13:31,661 --> 01:13:34,731 SHOWING YOU, I TYPED CVI INTO 1766 01:13:34,731 --> 01:13:37,000 PUB MED AND LOOKED AT THE 1767 01:13:37,000 --> 01:13:39,402 DEFINITION IN SEVERAL PAPERS. 1768 01:13:39,402 --> 01:13:42,272 YOU CAN SEE SOME SIMILARITIES. 1769 01:13:42,272 --> 01:13:44,374 THESE ARE BIG WELL ARE RESPECTED 1770 01:13:44,374 --> 01:13:46,309 GROUPS BUT ALL ARE DIFFERENT. 1771 01:13:46,309 --> 01:13:47,978 SOME HAVE MEDICAL HISTORY. 1772 01:13:47,978 --> 01:13:50,113 SOME HAVE SPECIFIC PARTS OF THE 1773 01:13:50,113 --> 01:13:52,048 BRAIN. 1774 01:13:52,048 --> 01:13:53,616 SOME OF THEM TALK ABOUT SYMPTOMS 1775 01:13:53,616 --> 01:13:56,419 LIKE PHOTO PHOBIA. 1776 01:13:56,419 --> 01:13:58,021 EVEN FOR THE FIRST FOUR PAPERS I 1777 01:13:58,021 --> 01:14:00,423 PULLED UP ABOUT CVI YOU CAN SEE 1778 01:14:00,423 --> 01:14:02,525 THERE'S REALLY NO CONSENSUS. 1779 01:14:02,525 --> 01:14:05,061 I'M GRATEFUL TO THE NEI AND ALL 1780 01:14:05,061 --> 01:14:07,297 OF YOU AND DR. CHANG AND MERABET 1781 01:14:07,297 --> 01:14:08,631 AND ALL THE SPEAKERS TODAY WE 1782 01:14:08,631 --> 01:14:12,469 CAN TRY TO WORK TOGETHER TO GET 1783 01:14:12,469 --> 01:14:13,203 STANDARDIZATION WHICH WILL HELP 1784 01:14:13,203 --> 01:14:14,971 ALL THE PATIENTS AND ALL THE 1785 01:14:14,971 --> 01:14:16,773 RESEARCHERS WHO ARE INTERESTED 1786 01:14:16,773 --> 01:14:18,308 IN THIS DISEASE SO THANK YOU 1787 01:14:18,308 --> 01:14:23,580 VERY MUCH. 1788 01:14:23,580 --> 01:14:26,316 >> OUR NEXT SPEAKER IS 1789 01:14:26,316 --> 01:14:34,324 DR. RAVENSCROFT CHAIR OF THE 1790 01:14:34,324 --> 01:14:40,130 CHILDHOOD VISUAL IMPAIRMENT THE 1791 01:14:40,130 --> 01:14:44,434 SCOTTISH SENSORY CENTER MORAY 1792 01:14:44,434 --> 01:14:46,002 HOUSE SCHOOL OF EDUCATION AND 1793 01:14:46,002 --> 01:14:50,006 SPORT UNIVERSITY OF EDINBURGH. 1794 01:14:50,006 --> 01:14:54,277 >> I'M TYPICALLY A SHORT FAT 1795 01:14:54,277 --> 01:14:56,112 BALD BLOKE IT FROM THE U.K. WITH 1796 01:14:56,112 --> 01:15:00,316 A STRANGE BEARD. 1797 01:15:00,316 --> 01:15:01,551 I'M TALKING ABOUT A NOTIFICATION 1798 01:15:01,551 --> 01:15:02,786 SYSTEM IN SCOTLAND AND I'M 1799 01:15:02,786 --> 01:15:04,387 SPEAKING ON BEHALF OF IT BECAUSE 1800 01:15:04,387 --> 01:15:06,589 I'M CHAIR OF THE DATA GROUP. 1801 01:15:06,589 --> 01:15:09,692 I HAVE ALL THE DATA. 1802 01:15:09,692 --> 01:15:13,063 SO TO INTRODUCE THIS AND ITS 1803 01:15:13,063 --> 01:15:14,097 RELEVANCY TO REGISTER I'M GOING 1804 01:15:14,097 --> 01:15:18,635 TO TALK ABOUT -- OKAY. 1805 01:15:18,635 --> 01:15:24,574 I'VE GOT A LOUD VOICE ANYWAY. 1806 01:15:24,574 --> 01:15:35,085 WHAT IT TELLS US ABOUT VINCYP 1807 01:15:41,391 --> 01:15:45,762 AND WE LOOK AT STUDIES AND 48% 1808 01:15:45,762 --> 01:15:49,499 OF THE CHILDREN OF 784 HAD A 1809 01:15:49,499 --> 01:15:54,204 DISORDER OF THE BRAIN AND VISUAL 1810 01:15:54,204 --> 01:15:55,605 PATHWAYS AND ENERGY PAPER IS 1811 01:15:55,605 --> 01:15:57,006 FROM A COLLEAGUE DR. WILLIAMS 1812 01:15:57,006 --> 01:16:00,510 WHO LOOKED AT A LARGER STUDY OF 1813 01:16:00,510 --> 01:16:01,978 CHILDREN IN PRIMARY SCHOOL AGE 1814 01:16:01,978 --> 01:16:04,080 AND HER RESULTS SUGGESTED THAT 1815 01:16:04,080 --> 01:16:05,715 ON AVERAGE THERE WOULD BE AT 1816 01:16:05,715 --> 01:16:07,150 LEAST ONE AFFECTED CHILD WITH 1817 01:16:07,150 --> 01:16:10,854 CVI IN EVERY CLASS OF 30. 1818 01:16:10,854 --> 01:16:13,890 SO THESE ARE VARIABLE STUDIES. 1819 01:16:13,890 --> 01:16:15,325 THESE ARE DIFFERENT DEFINITIONS 1820 01:16:15,325 --> 01:16:18,294 USED ACROSS THE BOARD. 1821 01:16:18,294 --> 01:16:19,395 WE NEED ACCURATE DATA. 1822 01:16:19,395 --> 01:16:21,564 IF WE'RE GOING TO HELP SUPPORT 1823 01:16:21,564 --> 01:16:23,166 AND TARGET ALL THE RESOURCES WE 1824 01:16:23,166 --> 01:16:25,368 HAVE WE NEED ACCURATE DATA. 1825 01:16:25,368 --> 01:16:28,972 SO IN SCOTLAND WE SET UP A 1826 01:16:28,972 --> 01:16:31,875 SYSTEM CALLED VINCYP AND IT'S A 1827 01:16:31,875 --> 01:16:34,310 NATIONAL MANAGED CLINICAL 1828 01:16:34,310 --> 01:16:34,544 NETWORK. 1829 01:16:34,544 --> 01:16:38,047 THERE'S 25 OF THEM IN SCOTLAND. 1830 01:16:38,047 --> 01:16:39,482 THEY ARE NHS BASED. 1831 01:16:39,482 --> 01:16:44,220 THEY'RE BASED IN MEDICINE AND 1832 01:16:44,220 --> 01:16:46,022 REQUIRE WHERE THERE'S A FULL 1833 01:16:46,022 --> 01:16:47,524 RANGE OF SPECIALIST CARE NEEDED 1834 01:16:47,524 --> 01:16:49,325 AND NOT AVAILABLE IN ALL REGIONS 1835 01:16:49,325 --> 01:16:51,060 TO MAKE SURE EVERYONE HAS 1836 01:16:51,060 --> 01:16:53,630 EQUITABLE SERVICES ACROSS ALL OF 1837 01:16:53,630 --> 01:16:53,897 SCOTLAND. 1838 01:16:53,897 --> 01:16:57,634 THE USE FOR VEHICLE FOR CHANGE 1839 01:16:57,634 --> 01:16:58,301 AND IMPROVEMENT AND WORKED 1840 01:16:58,301 --> 01:17:01,070 ACROSS GROUPS AND WHERE HE 1841 01:17:01,070 --> 01:17:01,971 TALKED ABOUT COLLABORATION 1842 01:17:01,971 --> 01:17:04,908 NEEDED AND BASICALLY TO HAVE 1843 01:17:04,908 --> 01:17:06,876 SPECIFIC TAILORED HEALTH CARE TO 1844 01:17:06,876 --> 01:17:09,179 THE NEEDS OF PARENTS, CHILDREN 1845 01:17:09,179 --> 01:17:10,914 AND THEIR FAMILIES. 1846 01:17:10,914 --> 01:17:15,985 IS THE VINCYP PATHWAY IN CARE. 1847 01:17:15,985 --> 01:17:19,189 THEY'RE PDs, OPTOMETRISTS, EARLY 1848 01:17:19,189 --> 01:17:21,858 INTERVENTION SERVICES AN 1849 01:17:21,858 --> 01:17:23,726 INTERVENTIONS GO TO THE HOSPITAL 1850 01:17:23,726 --> 01:17:25,695 CARE TEAM AND DOWN TO 1851 01:17:25,695 --> 01:17:29,899 MULTI-AGENCY SYSTEMS AND FROM 1852 01:17:29,899 --> 01:17:32,869 THERE THE DATA FROM IT GETS SENT 1853 01:17:32,869 --> 01:17:38,107 TO PEDIATRIC SERVICES AND 1854 01:17:38,107 --> 01:17:39,075 REHABILITATION SUPPORT AND 1855 01:17:39,075 --> 01:17:40,677 PRACTICAL SUPPORT AND THE 1856 01:17:40,677 --> 01:17:41,744 AGENCIES ARE THERE TOGETHER AT 1857 01:17:41,744 --> 01:17:44,113 THE REVIEW FOR THE CHILD. 1858 01:17:44,113 --> 01:17:46,316 WE WOULD EXPECT THE 1859 01:17:46,316 --> 01:17:47,817 PEDIATRICIAN, OPHTHALMOLOGIST 1860 01:17:47,817 --> 01:17:50,153 AND MULTI-AGENCY REVIEWER TO BE 1861 01:17:50,153 --> 01:17:51,854 THERE IN SCOTLAND ALL THERE 1862 01:17:51,854 --> 01:17:53,623 PRESENT SPEAKING THE SAME 1863 01:17:53,623 --> 01:17:54,490 LANGUAGE COORDINATING TOGETHER. 1864 01:17:54,490 --> 01:17:58,161 WE TALKED ABOUT DEFINITIONS. 1865 01:17:58,161 --> 01:18:00,663 I THOUGHT OF THE VINCYP 1866 01:18:00,663 --> 01:18:02,031 DEFINITION. 1867 01:18:02,031 --> 01:18:04,200 BEST CORRECTED VISUAL ACUITY AND 1868 01:18:04,200 --> 01:18:07,036 HAVE TO GET THIS RIGHT, 20 OVER 1869 01:18:07,036 --> 01:18:07,570 60. 1870 01:18:07,570 --> 01:18:11,708 WE'RE NOT USED TO THIS KIND OF 1871 01:18:11,708 --> 01:18:12,408 NOTATION IN THE U.K. 1872 01:18:12,408 --> 01:18:13,876 SWITCH TO LOGMAR. 1873 01:18:13,876 --> 01:18:20,116 IT'S MORE ACCURATE AND PROPER. 1874 01:18:20,116 --> 01:18:22,252 JUST SWITCH. 1875 01:18:22,252 --> 01:18:24,487 REQUIRES N18 PRINT AND EYE 1876 01:18:24,487 --> 01:18:28,458 MOVEMENT DISORDER AND/OR ANY 1877 01:18:28,458 --> 01:18:30,093 FORM OF COGNITIVE VISUAL 1878 01:18:30,093 --> 01:18:31,160 DYSFUNCTION DUE TO DISORDERS OF 1879 01:18:31,160 --> 01:18:36,266 THE BRAIN DEMONSTRATED TO AFFECT 1880 01:18:36,266 --> 01:18:36,532 FUNCTION. 1881 01:18:36,532 --> 01:18:39,302 THAT'S HOW OUR CVI DEFINITION. 1882 01:18:39,302 --> 01:18:40,737 WE DEVELOPED A SPECIFIC CVI 1883 01:18:40,737 --> 01:18:42,505 GUIDE IN SCOTLAND IN 2015 TO 1884 01:18:42,505 --> 01:18:46,142 IMPROVE THE IDENTIFICATION OF 1885 01:18:46,142 --> 01:18:50,113 CVI, TO REDUCE MISSED DIAGNOSIS 1886 01:18:50,113 --> 01:18:54,217 AND DEMYSTIFY WHAT CVI IS AND TO 1887 01:18:54,217 --> 01:18:54,851 GIVE PROFESSIONALS AND PARENTS 1888 01:18:54,851 --> 01:18:55,818 CONFIDENCE SINCE WE KNOW WHAT 1889 01:18:55,818 --> 01:18:57,320 WE'RE TALKING ABOUT. 1890 01:18:57,320 --> 01:18:58,321 THAT'S A GOOD THING. 1891 01:18:58,321 --> 01:19:01,791 THIS IS A COMPLICATED FLOW 1892 01:19:01,791 --> 01:19:04,994 DIAGRAM OF THE CVI DIAGNOSTIC 1893 01:19:04,994 --> 01:19:05,361 GAP. 1894 01:19:05,361 --> 01:19:08,431 I WON'T SPEND TOO LONG ON IT BUT 1895 01:19:08,431 --> 01:19:11,434 CAN ENTER OUR HOSPITAL SERVICES 1896 01:19:11,434 --> 01:19:13,803 FROM A NEURODEVELOPMENTAL 1897 01:19:13,803 --> 01:19:16,439 ASSESSMENT TEAM. 1898 01:19:16,439 --> 01:19:18,308 IT'S REALLY IMPORTANT WE INCLUDE 1899 01:19:18,308 --> 01:19:20,310 THE PEDIATRICIANS AND 1900 01:19:20,310 --> 01:19:22,178 NEUROPEDIATRICIANS AND 1901 01:19:22,178 --> 01:19:23,079 NEUROPSYCHOLOGISTS WITH AN 1902 01:19:23,079 --> 01:19:24,981 INTERESTING IN VISION IN 1903 01:19:24,981 --> 01:19:26,149 ASSESSING OUR CHILDREN WHO REMAY 1904 01:19:26,149 --> 01:19:27,550 SUCCESS FROM CVI. 1905 01:19:27,550 --> 01:19:31,087 I'M NOT EVEN TRYING TO REDUCE 1906 01:19:31,087 --> 01:19:33,456 THAT INTERSECT AT THE BEGINNING 1907 01:19:33,456 --> 01:19:36,859 BETWEEN AUTISM, BETWEEN THOSE 1908 01:19:36,859 --> 01:19:39,295 WITH OTHER NEURODEVELOPMENT 1909 01:19:39,295 --> 01:19:39,762 DISORDERS. 1910 01:19:39,762 --> 01:19:50,306 SO WE ARE CLEAR YOU CANNOT GET 1911 01:19:58,181 --> 01:20:01,584 THIS AND WE HAVE BE A FOR LOWER 1912 01:20:01,584 --> 01:20:03,553 VISUAL FIELD AND LOWER CVI AND 1913 01:20:03,553 --> 01:20:05,455 HIGHER ORDER CVI AS WELL. 1914 01:20:05,455 --> 01:20:06,823 I PUT THE LINK THERE IF YOU WANT 1915 01:20:06,823 --> 01:20:08,124 TO GO INTO DETAIL FROM THAT 1916 01:20:08,124 --> 01:20:11,094 CHART. 1917 01:20:11,094 --> 01:20:14,097 THIS IS DATA. 1918 01:20:14,097 --> 01:20:17,066 WE RELEASE PUBLIC DATA ONCE A 1919 01:20:17,066 --> 01:20:17,567 YEAR. 1920 01:20:17,567 --> 01:20:23,239 OUR POPULATION IS TINY 6 MILLION 1921 01:20:23,239 --> 01:20:23,773 PEOPLE. 1922 01:20:23,773 --> 01:20:33,649 SO WE HAVE IN OUR DATA SET 4,022 1923 01:20:33,649 --> 01:20:44,060 BUT ON BY PEDIATRICIANS. 1924 01:20:56,406 --> 01:21:00,843 THE TOP PRIMARY CONDITION IS 1925 01:21:00,843 --> 01:21:06,315 BRAIN BASED VISION IMPAIRMENT BY 1926 01:21:06,315 --> 01:21:16,426 FAR THE NUMBER ONE CONDITION 1927 01:21:16,426 --> 01:21:20,663 VERIFIED BY YOU IS BRAIN-BASED 1928 01:21:20,663 --> 01:21:22,999 CHILDHOOD VISION IMPAIRMENT AND 1929 01:21:22,999 --> 01:21:24,300 THE ASSOCIATED COMORBIDITIES 1930 01:21:24,300 --> 01:21:25,368 THAT GO WITH THAT. 1931 01:21:25,368 --> 01:21:30,339 WE'RE ABLE TO IDENTIFY ALL THE 1932 01:21:30,339 --> 01:21:31,707 CHILDREN AND TRACK THEM 1933 01:21:31,707 --> 01:21:37,180 THROUGHOUT SCOTLAND AND REFER TO 1934 01:21:37,180 --> 01:21:41,884 THE APPROPRIATE SERVICES AND WE 1935 01:21:41,884 --> 01:21:44,120 HAVE GENETIC AND DRUG USE AND 1936 01:21:44,120 --> 01:21:46,289 THERE'S MANY WAYS WE CAN SLICE 1937 01:21:46,289 --> 01:21:47,957 UP OUR DATA. 1938 01:21:47,957 --> 01:21:52,929 THE DIFFICULT PART OF GETTING 1939 01:21:52,929 --> 01:21:57,633 THE TALK WHICH WAY TO SLICE IT 1940 01:21:57,633 --> 01:21:59,235 AND DOING IT QUICKLY FOR THE 1941 01:21:59,235 --> 01:21:59,735 GRAPHS THERE. 1942 01:21:59,735 --> 01:22:10,246 WE CAN SLICE IT BY GENDER WE 1943 01:22:16,486 --> 01:22:18,120 HAVE 58% OF OUR NOTIFIED 1944 01:22:18,120 --> 01:22:19,956 CHILDREN AND THEY'RE CALLED 1945 01:22:19,956 --> 01:22:22,658 NOTIFIED BECAUSE THE PARENTS 1946 01:22:22,658 --> 01:22:24,527 HAVE TO CONCEPT. 1947 01:22:24,527 --> 01:22:26,863 -- CONSENT WE ASK FOR CONSENT TO 1948 01:22:26,863 --> 01:22:27,497 REGISTRY AND THAT'S AN IMPORTANT 1949 01:22:27,497 --> 01:22:33,035 DIFFERENCE. 1950 01:22:33,035 --> 01:22:36,239 WE HAVE 1,042 NEVER RECEIVED 1951 01:22:36,239 --> 01:22:37,473 CONSENT AND 58% IN THE NEXT 1952 01:22:37,473 --> 01:22:39,675 GROUP AND 15% IS WHOLE GLOBE. 1953 01:22:39,675 --> 01:22:39,909 SO HUGE. 1954 01:22:39,909 --> 01:22:42,311 IT'S HUGE. 1955 01:22:42,311 --> 01:22:45,181 SO IF YOU GO BACK TO KATHY'S 1956 01:22:45,181 --> 01:22:47,817 PAPER, IF 58% OF ALL CHILDREN 1957 01:22:47,817 --> 01:22:49,886 WERE VISION IMPAIRMENT IN 1958 01:22:49,886 --> 01:22:52,588 SCOTLAND HAVE BRAIN-BASED VI 1959 01:22:52,588 --> 01:22:54,624 THAT MEANS THERE'S AT LEAST 50 1960 01:22:54,624 --> 01:22:58,294 WHO REMAIN UNDIAGNOSED JUST BY 1961 01:22:58,294 --> 01:23:00,162 DOING DOING THAT. 1962 01:23:00,162 --> 01:23:02,999 FOR EVERYONE THERE'S ANOTHER 50. 1963 01:23:02,999 --> 01:23:07,103 SO WHILE WE MAY BE OKAY AT 1964 01:23:07,103 --> 01:23:08,738 IDENTIFYING THE PER SENT 1965 01:23:08,738 --> 01:23:10,306 THERE'LL BE ANOTHER 50 WHO 1966 01:23:10,306 --> 01:23:11,507 REMAIN UNDIAGNOSED. 1967 01:23:11,507 --> 01:23:13,609 SO HAVING A REGISTER OR 1968 01:23:13,609 --> 01:23:14,510 NOTIFICATION SYSTEM IS GREAT 1969 01:23:14,510 --> 01:23:16,479 BECAUSE YOU CAN MAP THEM, RIGHT. 1970 01:23:16,479 --> 01:23:18,381 YOU CAN MAP THEM AND WHERE ALL 1971 01:23:18,381 --> 01:23:20,383 THE CHILDREN ARE IN SCOTT LAND 1972 01:23:20,383 --> 01:23:22,485 WITH VISION IMPAIRMENT. 1973 01:23:22,485 --> 01:23:24,320 I KNOW WHERE THEY ALL ARE AND 1974 01:23:24,320 --> 01:23:25,855 LIVE AND MAKE SURE THAT SERVICES 1975 01:23:25,855 --> 01:23:26,455 ARE TARGETED AND DIRECTED TO 1976 01:23:26,455 --> 01:23:29,859 THESE CHILDREN. 1977 01:23:29,859 --> 01:23:30,860 WE CAN MAP THEM. 1978 01:23:30,860 --> 01:23:33,930 WE CAN MAP ALL THE FIELDS WITH 1979 01:23:33,930 --> 01:23:35,698 CVI AND BY THE WAY, WE CAN DO 1980 01:23:35,698 --> 01:23:37,833 THIS WITH ANY PRIMARY DIAGNOSIS. 1981 01:23:37,833 --> 01:23:39,569 WE CAN MAP ANY OF THESE CHILDREN 1982 01:23:39,569 --> 01:23:43,406 IN THE PRIMARY DIAGNOSES. 1983 01:23:43,406 --> 01:23:45,541 I'M SHOWING THE CVI MAP. 1984 01:23:45,541 --> 01:23:46,309 THEY'RE ALL CHILDREN THERE WITH 1985 01:23:46,309 --> 01:23:48,444 CVI AND IF WE KNOW WHERE THEY 1986 01:23:48,444 --> 01:23:50,346 LIVE THEN THIS GIVES US A 1987 01:23:50,346 --> 01:23:52,548 SPECIAL THING WE HAVE IN 1988 01:23:52,548 --> 01:23:52,815 SCOTLAND. 1989 01:23:52,815 --> 01:23:56,686 THIS GIVES US ACCESS TO SIMD AND 1990 01:23:56,686 --> 01:23:59,555 THAT'S MAGIC. 1991 01:23:59,555 --> 01:24:02,625 AS THE SCOTTISH INDEX OF 1992 01:24:02,625 --> 01:24:10,299 MULTIPLE DEPRIVATION A 1993 01:24:10,299 --> 01:24:19,742 SCIENTIFIC METHODOLOGY BY D 1994 01:24:19,742 --> 01:24:30,252 DECILES OR SEX AND WE SEE CVI 1995 01:24:30,252 --> 01:24:33,389 AND SIMD AND CHILDREN ARE MORE 1996 01:24:33,389 --> 01:24:35,324 LIKELY TO COME FROM THE MORE 1997 01:24:35,324 --> 01:24:36,459 DEPRIVED AREAS OF SCOTLAND. 1998 01:24:36,459 --> 01:24:39,161 THIS IS A STATISTICAL FINDING 1999 01:24:39,161 --> 01:24:39,662 HERE. 2000 01:24:39,662 --> 01:24:41,530 IF YOU LIVE IN THE MOST DEPRIVED 2001 01:24:41,530 --> 01:24:45,534 AREAS OF SCOTLAND, YOU'RE MORE 2002 01:24:45,534 --> 01:24:47,169 LIKELY TO FIND CHILDREN WITH 2003 01:24:47,169 --> 01:24:47,670 CVI. 2004 01:24:47,670 --> 01:24:49,905 FOR THE NERDS WHO LIKE THEIR 2005 01:24:49,905 --> 01:24:51,540 GRAPHS, THIS IS A CORRELATION 2006 01:24:51,540 --> 01:24:52,508 GRAPH AND SEE ALL THE POINTS 2007 01:24:52,508 --> 01:24:55,177 THERE AND IF WE DO A STRONG 2008 01:24:55,177 --> 01:25:00,082 CORRELATION, THE CORRELATION IS 2009 01:25:00,082 --> 01:25:00,249 24. 2010 01:25:00,249 --> 01:25:03,753 CVI IS FOUND MORE IN THE MOST 2011 01:25:03,753 --> 01:25:05,154 DEPRIVED AREAS OF SCOTLAND BASED 2012 01:25:05,154 --> 01:25:07,356 ON THE PERCENTAGE OF QUINTILES. 2013 01:25:07,356 --> 01:25:09,058 WE'RE FINDING THIS ALL OVER THE 2014 01:25:09,058 --> 01:25:09,258 PLACE. 2015 01:25:09,258 --> 01:25:10,426 WE'RE ASKING ALL OF OUR 2016 01:25:10,426 --> 01:25:12,028 COLLEAGUES TO DO THIS SIMILAR 2017 01:25:12,028 --> 01:25:14,096 KIND OF ANALYSIS AND FINDING 2018 01:25:14,096 --> 01:25:15,431 THIS REPLICATED QUITE A LOT. 2019 01:25:15,431 --> 01:25:17,033 AND ANOTHER THING WE CAN DO 2020 01:25:17,033 --> 01:25:19,335 AGAIN IS SLIEFG UP THE DATA WE 2021 01:25:19,335 --> 01:25:22,772 WANTED TO LOOK AT ALL OF OUR 2022 01:25:22,772 --> 01:25:24,540 CHILDREN WITH BRAIN-BASED CVI 2023 01:25:24,540 --> 01:25:25,675 AND LOOK AT ACUITY SCORES. 2024 01:25:25,675 --> 01:25:28,911 THIS IS A CHART OF CHILDREN 2025 01:25:28,911 --> 01:25:34,083 BASED ON THE ETIOLOGY AND ACUITY 2026 01:25:34,083 --> 01:25:37,520 AND IF YOU LOOK AT PREMATURITY 2027 01:25:37,520 --> 01:25:41,157 YOU CAN SEE MOST CHILDREN HAVE 2028 01:25:41,157 --> 01:25:42,792 PREMATURITY AND CVI THESE ARE 2029 01:25:42,792 --> 01:25:46,562 THE WORLD HEALTH DEFINITIONS OF 2030 01:25:46,562 --> 01:25:48,964 ACUITY AND HAVE VISUAL 2031 01:25:48,964 --> 01:25:49,765 IMPAIRMENT. 2032 01:25:49,765 --> 01:25:52,201 THERE'S FEW CHILDREN WITH TOTAL 2033 01:25:52,201 --> 01:25:53,869 OR NEAR TOTAL BLINDNESS. 2034 01:25:53,869 --> 01:25:56,105 THERE ARE FEW BUT NOT SO MUCH 2035 01:25:56,105 --> 01:26:00,276 AND MANY MANY OF THE CHILDREN 2036 01:26:00,276 --> 01:26:04,547 WITH TERM BIRTH HYPOXIA HAVE FEW 2037 01:26:04,547 --> 01:26:06,415 VISUAL ACUITY LOSS AT ALL. 2038 01:26:06,415 --> 01:26:08,284 WE'RE ABLE TO COLLECT THE DATA 2039 01:26:08,284 --> 01:26:11,287 IN THE STANDARDIZED WAY ACROSS 2040 01:26:11,287 --> 01:26:13,055 SCOTLAND AND TRAIN PEDIATRICIANS 2041 01:26:13,055 --> 01:26:15,324 AND OPHTHALMOLOGISTS ON THE 2042 01:26:15,324 --> 01:26:21,797 ASSESSMENTS AND TESTS WE USE. 2043 01:26:21,797 --> 01:26:23,165 QUICK SUMMARY. 2044 01:26:23,165 --> 01:26:24,700 AND MORE COMMON IN BOYS. 2045 01:26:24,700 --> 01:26:27,603 MANY CHILDREN ARE FROM THE 2046 01:26:27,603 --> 01:26:32,842 POORER AREAS OF SCOTLAND, HAVE 2047 01:26:32,842 --> 01:26:37,913 HEALTH ISSUES AND SIGNIFICANT 2048 01:26:37,913 --> 01:26:40,449 VISION IMPAIRMENT IS RARE AND 2049 01:26:40,449 --> 01:26:50,926 ROP IS UNCOMMON IN SCOTLAND. 2050 01:26:52,261 --> 01:26:54,296 IT'S USEFUL AND SECURE. 2051 01:26:54,296 --> 01:26:56,365 IT'S CENTRALLY HELD AND PART OF 2052 01:26:56,365 --> 01:26:58,234 THE NHS SYSTEM AND NOT PART OF A 2053 01:26:58,234 --> 01:27:00,603 RESEARCH TEAM AND NOT HELD IN MY 2054 01:27:00,603 --> 01:27:03,405 LAB OR ANYTHING LIKE THAT. 2055 01:27:03,405 --> 01:27:05,341 IT'S HELD ON THE NIH SYSTEMS AND 2056 01:27:05,341 --> 01:27:10,913 THINK WE NOW HAVE REGISTERED OR 2057 01:27:10,913 --> 01:27:13,549 NOTIFIED 65% OF ALL THE CHILDREN 2058 01:27:13,549 --> 01:27:14,984 WITH VISION IMPAIRMENT IN 2059 01:27:14,984 --> 01:27:15,251 SCOTLAND. 2060 01:27:15,251 --> 01:27:25,294 THANK YOU VERY MUCH. 2061 01:27:25,294 --> 01:27:27,863 >> THANK YOU FOR SHARING YOUR 2062 01:27:27,863 --> 01:27:28,130 EXPERTISE. 2063 01:27:28,130 --> 01:27:30,666 WE HAVE A LOT TO LEARN. 2064 01:27:30,666 --> 01:27:33,235 WE HAVE A JOINT PRESENTATION IF 2065 01:27:33,235 --> 01:27:34,670 I'M NOT MISTAKEN FROM ASSOCIATE 2066 01:27:34,670 --> 01:27:36,472 DIRECTOR OFFICE OF DATA SCIENCES 2067 01:27:36,472 --> 01:27:39,542 AND HEALTH INFORMATICS WITH THE 2068 01:27:39,542 --> 01:27:42,845 NATIONAL EYE INSTITUTE AND ERICA 2069 01:27:42,845 --> 01:27:47,683 NELSON WILL START US OFF FROM 2070 01:27:47,683 --> 01:27:53,856 THE NATIONAL EYE INSTITUTE. 2071 01:27:53,856 --> 01:27:56,692 KERRY AND ERIKA PLEASE. 2072 01:27:56,692 --> 01:27:56,826 . 2073 01:27:56,826 --> 01:28:03,065 >> I'M ERIKA NELSON WITHIN THE 2074 01:28:03,065 --> 01:28:04,233 NATIONAL EYE INSTITUTE OFFICE OF 2075 01:28:04,233 --> 01:28:08,437 DATA SCIENCE AND HEALTH 2076 01:28:08,437 --> 01:28:09,305 INFORMATICS. 2077 01:28:09,305 --> 01:28:10,606 I'M PLEASED TO BE HERE TO SHARE 2078 01:28:10,606 --> 01:28:12,741 THE GOAL OF THE REGISTRY. 2079 01:28:12,741 --> 01:28:15,277 I'M GOING TO BE HELPING TO GET 2080 01:28:15,277 --> 01:28:16,812 THE CVI REGISTRY UP AND RUNNING 2081 01:28:16,812 --> 01:28:21,016 AND THEN MANAGING THE DAY IT DAY 2082 01:28:21,016 --> 01:28:31,560 OPERATIONS OF THE CVI REGISTRY. 2083 01:28:46,208 --> 01:28:48,110 AND WE PROVIDE A HUB FOR NEW 2084 01:28:48,110 --> 01:28:50,312 PROGRAMS IN DATA COLLECTION, 2085 01:28:50,312 --> 01:28:52,181 DATA SHARING AND DATA 2086 01:28:52,181 --> 01:28:52,581 INTEROPERABILITY. 2087 01:28:52,581 --> 01:28:55,417 AND OUR GOALS AS AN OFFICE ARE 2088 01:28:55,417 --> 01:28:57,019 TO ACCELERATE SCIENTIFIC 2089 01:28:57,019 --> 01:28:58,187 DISCOVERY, FOSTER COLLABORATIVE 2090 01:28:58,187 --> 01:29:00,189 RESEARCH AND ULTIMATELY IMPROVE 2091 01:29:00,189 --> 01:29:03,425 PUBLIC HEALTH THROUGH THE 2092 01:29:03,425 --> 01:29:04,760 APPLICATION OF SCIENTIFIC DATA 2093 01:29:04,760 --> 01:29:06,295 AND KNOWLEDGE MANAGEMENT IN THE 2094 01:29:06,295 --> 01:29:11,533 EYE HEALTH SCIENCES. 2095 01:29:11,533 --> 01:29:13,469 SO WHAT IS A REGISTRY. 2096 01:29:13,469 --> 01:29:14,670 IT COULD BE MANY DIFFERENT 2097 01:29:14,670 --> 01:29:16,205 THINGS. 2098 01:29:16,205 --> 01:29:18,040 I PROVIDED A DEFINITION HERE. 2099 01:29:18,040 --> 01:29:19,775 AN ORGANIZED SYSTEM FOR THE 2100 01:29:19,775 --> 01:29:22,011 COLLECTION, STORAGE, RETRIEVAL, 2101 01:29:22,011 --> 01:29:23,245 ANALYSIS AND DISSEMINATION OF 2102 01:29:23,245 --> 01:29:25,014 INFORMATION ON PERSONS WHO HAVE 2103 01:29:25,014 --> 01:29:26,115 A PARTICULAR DISEASE OR 2104 01:29:26,115 --> 01:29:28,751 CONDITION. 2105 01:29:28,751 --> 01:29:30,920 AND A REGISTRY CAN BE AS SIMPLE 2106 01:29:30,920 --> 01:29:33,656 AS A LIST OF PEOPLE TO CONTACT 2107 01:29:33,656 --> 01:29:34,290 IN THE FUTURE. 2108 01:29:34,290 --> 01:29:37,059 IT CAN BE A SYSTEM FOR TRACKING 2109 01:29:37,059 --> 01:29:39,061 NATURAL HISTORY. 2110 01:29:39,061 --> 01:29:41,797 IT CAN STUDY SAFETY OR HARM AND 2111 01:29:41,797 --> 01:29:44,066 DRUGS OR CAN BE ANY COMBINATION 2112 01:29:44,066 --> 01:29:46,302 OF THESE THINGS I'VE LISTED AS 2113 01:29:46,302 --> 01:29:50,105 WELL AS SOME OTHER THINGS THAT 2114 01:29:50,105 --> 01:29:51,640 AREN'T LISTED THERE. 2115 01:29:51,640 --> 01:29:53,175 SO AS FAR AS WHY A REGISTRY MAY 2116 01:29:53,175 --> 01:29:55,911 BE IMPORTANT AND WHAT A REGISTRY 2117 01:29:55,911 --> 01:29:58,013 CAN ACCOMPLISH, AGAIN IT CAN BE 2118 01:29:58,013 --> 01:30:00,582 USED FOR A WIDE VARIETY OF 2119 01:30:00,582 --> 01:30:01,550 THINGS. 2120 01:30:01,550 --> 01:30:03,485 WE MIGHT BE USING IT TO COLLECT 2121 01:30:03,485 --> 01:30:05,354 SOME BASELINE DATA ABOUT A 2122 01:30:05,354 --> 01:30:08,157 DISEASE OR CONDITION, DETERMINE 2123 01:30:08,157 --> 01:30:08,891 PREVALENCE. 2124 01:30:08,891 --> 01:30:11,760 IT MIGHT BE USED FOR 2125 01:30:11,760 --> 01:30:13,028 FACILITATING RESEARCH AND 2126 01:30:13,028 --> 01:30:13,529 COLLABORATION. 2127 01:30:13,529 --> 01:30:16,899 AND I INCLUDED A FEW WELL-KNOWN 2128 01:30:16,899 --> 01:30:18,567 REGISTRIES IN THE EYE RESEARCH 2129 01:30:18,567 --> 01:30:19,601 SPACE UP THERE. 2130 01:30:19,601 --> 01:30:24,340 LOOK THE AMERICAN ACADEMY OF 2131 01:30:24,340 --> 01:30:27,343 OPHTHALMOLOGY IRIS REGISTRY AND 2132 01:30:27,343 --> 01:30:30,312 RETINA TRACKER REGISTRY AND 2133 01:30:30,312 --> 01:30:32,047 NATIONAL EYE INSTITUTE EYE GENE 2134 01:30:32,047 --> 01:30:33,048 REGISTRY FOR INHERITED RARE EYE 2135 01:30:33,048 --> 01:30:37,386 CONDITIONS. 2136 01:30:37,386 --> 01:30:43,092 AND I WANTED TO SHARE ABOUT THE 2137 01:30:43,092 --> 01:30:44,593 EXISTING NEI REGISTRY SO WE CAN 2138 01:30:44,593 --> 01:30:46,261 LOOK AT IT THE SUCCESSES AND 2139 01:30:46,261 --> 01:30:48,931 TAKE LESSONS WITH US INTO THE 2140 01:30:48,931 --> 01:30:54,303 CVI REGISTRY BUILDING PROCESS. 2141 01:30:54,303 --> 01:30:58,140 SO THE NEI REGISTRY IS A 2142 01:30:58,140 --> 01:31:00,342 PARTICIPANT CONTACT REGISTRY 2143 01:31:00,342 --> 01:31:01,810 COUPLED TO A DATABASE WITH 2144 01:31:01,810 --> 01:31:03,645 INFORMATION, FAMILY HISTORY AND 2145 01:31:03,645 --> 01:31:05,547 GENETIC AND IMAGING DATA. 2146 01:31:05,547 --> 01:31:08,117 AND THE RESOURCES ALSO COUPLED 2147 01:31:08,117 --> 01:31:14,456 WITH A BIO BANK OF PARTICIPANT 2148 01:31:14,456 --> 01:31:19,161 DNA SAMPLES AND RESEARCHERS CAN 2149 01:31:19,161 --> 01:31:21,030 ACCESS IT VIA A SMALLER REVIEW 2150 01:31:21,030 --> 01:31:23,565 COMMITTEE AND RESEARCHERS CAN 2151 01:31:23,565 --> 01:31:24,800 REQUEST THE DATA COORDINATING 2152 01:31:24,800 --> 01:31:26,301 CENTER REACH OUT TO PARTICIPANTS 2153 01:31:26,301 --> 01:31:29,238 AGAIN AND LET THEM KNOW ABOUT 2154 01:31:29,238 --> 01:31:30,305 ADDITIONAL STUDIES THEY MAY BE 2155 01:31:30,305 --> 01:31:36,278 ELIGIBLE FOR. 2156 01:31:36,278 --> 01:31:37,946 AGAIN, WANTED TO SHARE SOME 2157 01:31:37,946 --> 01:31:39,581 SUCCESSES TO SEE WHY A REGISTRY 2158 01:31:39,581 --> 01:31:42,284 IS GOING TO BE VERY HELPFUL FOR 2159 01:31:42,284 --> 01:31:44,119 THE CVI COMMUNITY. 2160 01:31:44,119 --> 01:31:49,124 SO EYE GENE IS A RARE DISEASE 2161 01:31:49,124 --> 01:31:51,960 REGISTRY BUT WE FOUND STRENGTH 2162 01:31:51,960 --> 01:31:53,996 IN NUMBERS BY INCLUDING 38 2163 01:31:53,996 --> 01:31:55,531 DIAGNOSES AND CATEGORIES WITHIN 2164 01:31:55,531 --> 01:31:56,098 THE DATABASE. 2165 01:31:56,098 --> 01:31:59,334 THE MODEL HAS BEEN SUCCESSFUL 2166 01:31:59,334 --> 01:32:01,770 RESULTING IN ALMOST 200 2167 01:32:01,770 --> 01:32:03,272 PUBLICATIONS OVER 30 SECONDARY 2168 01:32:03,272 --> 01:32:04,940 RESEARCH STUDIES AND SUCCESSFUL 2169 01:32:04,940 --> 01:32:07,709 RECRUITMENT FOR A HANDFUL OF 2170 01:32:07,709 --> 01:32:08,477 OTHER NATURAL HISTORY AND 2171 01:32:08,477 --> 01:32:09,311 THERAPEUTIC TRIALS. 2172 01:32:09,311 --> 01:32:10,312 HOPEFULLY THOSE ARE SOME OF THE 2173 01:32:10,312 --> 01:32:12,881 THINGS WE CAN LOOK FORWARD TO 2174 01:32:12,881 --> 01:32:16,018 WITH OUR CVI REGISTRY. 2175 01:32:16,018 --> 01:32:19,254 I'M GOING TO HAND IT OVER TO 2176 01:32:19,254 --> 01:32:20,923 KERRY NOW TO TALK ABOUT OUR DATA 2177 01:32:20,923 --> 01:32:25,561 COLLECTION AND SHARING SYSTEM. 2178 01:32:25,561 --> 01:32:27,296 >> THANK YOU, EVERYONE. 2179 01:32:27,296 --> 01:32:29,331 JUST TO SET THE STAGE. 2180 01:32:29,331 --> 01:32:30,732 I'M GOING TO BE DOING A LITTLE 2181 01:32:30,732 --> 01:32:36,271 BIT OF A DEEPER DIVE TO THE 2182 01:32:36,271 --> 01:32:38,107 TECHNICAL COMPONENTS OF THE 2183 01:32:38,107 --> 01:32:38,841 REGISTRY. 2184 01:32:38,841 --> 01:32:41,510 I'M A WHITE FEMALE WITH BLONDISH 2185 01:32:41,510 --> 01:32:43,278 BROWNISH HAIR. 2186 01:32:43,278 --> 01:32:45,481 IT'S ALWAYS A DEBATE AND EIGHT 2187 01:32:45,481 --> 01:32:47,983 OF GRAY SEEPING IN. 2188 01:32:47,983 --> 01:32:50,319 I'M A GOOD FOOT SHORTER THAN 2189 01:32:50,319 --> 01:32:54,523 ERIKA SO IT'S FITTING I TAKE YOU 2190 01:32:54,523 --> 01:32:57,893 ON A LOWER LEVEL DEEPER DIVE. 2191 01:32:57,893 --> 01:32:59,528 A COUPLE PERSONAL WORDS FIRST, 2192 01:32:59,528 --> 01:33:01,497 REFLECTIONS I'VE HAD AND I'VE 2193 01:33:01,497 --> 01:33:02,965 HAD THE GREAT PLEASURE OF 2194 01:33:02,965 --> 01:33:03,932 MEETING A LOT OF FOLKS IN THE 2195 01:33:03,932 --> 01:33:05,100 COMMUNITY IN PITTSBURGH A FEW 2196 01:33:05,100 --> 01:33:07,870 WEEKS AGO AND THIS HAS BEEN A 2197 01:33:07,870 --> 01:33:09,404 CRASH COURSE FOR ME IN CVI. 2198 01:33:09,404 --> 01:33:12,674 AS YOU CAN SEE, I'VE BEEN 2199 01:33:12,674 --> 01:33:15,177 RUNNING THE EYE GENE PROGRAM 2200 01:33:15,177 --> 01:33:17,613 SINCE 2008 WHEN I JOINED NEI AND 2201 01:33:17,613 --> 01:33:20,115 HAVE BEEN STEEPED IN RARE 2202 01:33:20,115 --> 01:33:22,084 DISEASE RESEARCH. 2203 01:33:22,084 --> 01:33:24,153 A LOT OF THAT RETINA DISEASE 2204 01:33:24,153 --> 01:33:26,288 RESEARCH AND I CAN JUST SAY IT'S 2205 01:33:26,288 --> 01:33:30,292 BEEN AN AMAZING EXPERIENCE. 2206 01:33:30,292 --> 01:33:33,428 I LOVE WORKING FOR THE NEI SO 2207 01:33:33,428 --> 01:33:34,730 MUCH AND THE EYE GENE PROJECT 2208 01:33:34,730 --> 01:33:36,265 BECAUSE I GOT TO HEAR THE 2209 01:33:36,265 --> 01:33:37,366 PERSONAL STORIES. 2210 01:33:37,366 --> 01:33:40,435 I ENJOY ALL THOSE INTERACTIONS 2211 01:33:40,435 --> 01:33:41,603 AND HEARING ABOUT YOUR 2212 01:33:41,603 --> 01:33:42,371 EXPERIENCES AND THAT'S AN 2213 01:33:42,371 --> 01:33:44,006 IMPORTANT PART FOR US WHEN WE'RE 2214 01:33:44,006 --> 01:33:45,174 THINKING ABOUT THE REGISTRY. 2215 01:33:45,174 --> 01:33:47,809 I WANT TO SAY THANK YOU FOR 2216 01:33:47,809 --> 01:33:49,745 BEING OPEN AND SHARING THAT. 2217 01:33:49,745 --> 01:33:52,981 I ALSO WANT -- A COUPLE THINGS 2218 01:33:52,981 --> 01:33:57,186 OVER THE PAST OR YESTERDAY AND 2219 01:33:57,186 --> 01:33:57,386 TODAY. 2220 01:33:57,386 --> 01:34:01,223 I LOVE THIS QUOTE THAT WE'VE 2221 01:34:01,223 --> 01:34:04,092 SAID A DIAGNOSIS CAN BE LIFE 2222 01:34:04,092 --> 01:34:04,593 AFFIRMING. 2223 01:34:04,593 --> 01:34:10,632 THE OPEN DOOR TO RESOURCES. 2224 01:34:10,632 --> 01:34:12,935 IT WAS GRASSROOTS AND 2225 01:34:12,935 --> 01:34:13,969 PARTICIPANTS OF THE REGISTRY 2226 01:34:13,969 --> 01:34:15,470 SHOWING WITH OTHER FAMILIES. 2227 01:34:15,470 --> 01:34:17,739 OTHER PEOPLE HAVING THAT SAME 2228 01:34:17,739 --> 01:34:18,707 LIVED EXPERIENCE ABOUT WHY THEY 2229 01:34:18,707 --> 01:34:20,642 WANTED TO BE PART OF THAT 2230 01:34:20,642 --> 01:34:21,009 REGISTRY. 2231 01:34:21,009 --> 01:34:23,212 AND I HOPE TO SEE THAT SAME 2232 01:34:23,212 --> 01:34:25,347 INITIATIVE TAKE HOLD WITH THIS 2233 01:34:25,347 --> 01:34:27,049 PROJECT AND SO JUST WANTED TO 2234 01:34:27,049 --> 01:34:29,351 SAY WE ARE SUPER EXCITED. 2235 01:34:29,351 --> 01:34:31,220 I'M HAPPY TO HAVE ERIKA ON MY 2236 01:34:31,220 --> 01:34:31,420 TEAM. 2237 01:34:31,420 --> 01:34:34,323 SHE'S AN AMAZING SUPER STAR AND 2238 01:34:34,323 --> 01:34:38,827 THE TWO OF US ARE DEDICATED TO 2239 01:34:38,827 --> 01:34:42,297 SEEING THIS BE A SUCCESS. 2240 01:34:42,297 --> 01:34:43,565 THE NITTY-GRITTY. 2241 01:34:43,565 --> 01:34:45,133 THE REGISTRY PLATFORM IS WHAT 2242 01:34:45,133 --> 01:34:46,301 I'LL SHARE ABOUT. 2243 01:34:46,301 --> 01:34:52,841 WE AT THE NEI USED THE BIO 2244 01:34:52,841 --> 01:34:56,111 MEDICAL RESEARCH BIO INFORMATICS 2245 01:34:56,111 --> 01:35:00,482 SYSTEM AN END TO END BIOMEDICAL 2246 01:35:00,482 --> 01:35:04,286 WHERE WE CAN COLLECT THE DATA 2247 01:35:04,286 --> 01:35:08,123 USING CONTROLLED STANDARD DATA 2248 01:35:08,123 --> 01:35:09,858 DICTIONARIES, ELECTRONIC CASE 2249 01:35:09,858 --> 01:35:11,760 REPORT FORMS AND THAT DATA IS 2250 01:35:11,760 --> 01:35:13,462 VALIDATED WITHIN THE SYSTEM TO 2251 01:35:13,462 --> 01:35:16,798 MAKE SURE THINGS MAKE SENSE. 2252 01:35:16,798 --> 01:35:21,169 AND ALSO IS AVAILABLE FOR 2253 01:35:21,169 --> 01:35:23,572 RESEARCH USE AT LIKE 24 HOURS 2254 01:35:23,572 --> 01:35:24,539 LATER AS SOON AS IT HITS THE 2255 01:35:24,539 --> 01:35:26,008 DATABASE IT CAN BE AVAILABLE FOR 2256 01:35:26,008 --> 01:35:27,009 RESEARCH USE. 2257 01:35:27,009 --> 01:35:30,779 THIS IS A SYSTEM THAT WAS 2258 01:35:30,779 --> 01:35:31,380 UNUSUA 2259 01:35:31,380 --> 01:35:34,449 INITIALLY FUNDED BY THE NATIONAL 2260 01:35:34,449 --> 01:35:36,084 EYE INSTITUTE TO STUDY TRAUMATIC 2261 01:35:36,084 --> 01:35:38,920 BRAIN INJURY. 2262 01:35:38,920 --> 01:35:40,622 WE HAVE A NICE COLLABORATION 2263 01:35:40,622 --> 01:35:42,124 WITH THOSE FOLKS AND HOPEFULLY 2264 01:35:42,124 --> 01:35:43,825 WE CAN HAVE MORE COLLABORATIVE 2265 01:35:43,825 --> 01:35:46,295 EFFORTS THERE. 2266 01:35:46,295 --> 01:35:47,195 THERE'S A LOT OF INFORMATION IN 2267 01:35:47,195 --> 01:35:50,632 THE TBI REGISTRY AND INFORMATIC 2268 01:35:50,632 --> 01:35:52,134 SYSTEM. 2269 01:35:52,134 --> 01:35:54,303 I THINK YOU'LL SEE HOW THAT HAS 2270 01:35:54,303 --> 01:35:55,237 CHANGED THE LANDSCAPE OF DOING 2271 01:35:55,237 --> 01:35:57,572 TBI RESEARCH. 2272 01:35:57,572 --> 01:36:01,443 IT'S ALSO USED BY PARKINSON'S, 2273 01:36:01,443 --> 01:36:05,047 EYE GENE AT THE NEI NURSING AND 2274 01:36:05,047 --> 01:36:05,847 CENTER FOR NEUROSCIENCE AND 2275 01:36:05,847 --> 01:36:09,651 REGENERATIVE MEDICINE. 2276 01:36:09,651 --> 01:36:11,953 SO GOING EVEN FURTHER IN, YOU 2277 01:36:11,953 --> 01:36:13,822 COULD SEE THE PLATFORM ITSELF 2278 01:36:13,822 --> 01:36:16,425 HAS A REALLY NICE USER 2279 01:36:16,425 --> 01:36:17,025 INTERFACE. 2280 01:36:17,025 --> 01:36:20,128 SO, THERE'S A COUPLE THINGS. 2281 01:36:20,128 --> 01:36:21,263 THE BRICKS. 2282 01:36:21,263 --> 01:36:23,231 AND ONE IS WHERE WE COLLECTOR 2283 01:36:23,231 --> 01:36:25,534 CREATE THE DATA COLLECTION 2284 01:36:25,534 --> 01:36:28,437 FORUMS AND PARTICIPANTS, 2285 01:36:28,437 --> 01:36:29,805 CLINICIANS, ANYONE CAN ENTER 2286 01:36:29,805 --> 01:36:30,172 DATA. 2287 01:36:30,172 --> 01:36:33,075 I'M SURE A LOT OF US RESEARCHERS 2288 01:36:33,075 --> 01:36:36,345 ARE FAMILIAR WITH RED CAP. 2289 01:36:36,345 --> 01:36:38,814 IT'S ESSENTIALLY RED CAP BUT 2290 01:36:38,814 --> 01:36:40,048 FEEDS IN OUR DATABASE WITHOUT 2291 01:36:40,048 --> 01:36:42,317 HAVING TO EXPORT AND IMPORT IN 2292 01:36:42,317 --> 01:36:43,251 THE SYSTEM. 2293 01:36:43,251 --> 01:36:44,286 IT'S A MORE CONCISE LESS STEPS 2294 01:36:44,286 --> 01:36:50,058 INVOLVED. 2295 01:36:50,058 --> 01:36:53,729 I CAN CONTROL THE DATA REGISTRY 2296 01:36:53,729 --> 01:36:55,497 AND CONTROL ACCESS TO WHO GETS 2297 01:36:55,497 --> 01:36:57,566 WHAT DATA AND WHICH PROJECTS ARE 2298 01:36:57,566 --> 01:36:57,833 APPROVED. 2299 01:36:57,833 --> 01:37:00,001 ON THE CONSENT BY CONSENT LEVEL 2300 01:37:00,001 --> 01:37:02,571 AND PARTICIPANT LEVEL. 2301 01:37:02,571 --> 01:37:04,139 THERE'S A LOT OF CONTROLS HERE 2302 01:37:04,139 --> 01:37:06,575 WHERE WE CAN MAKE SURE THE 2303 01:37:06,575 --> 01:37:12,180 CONSENT REQUIREMENTS AND THE 2304 01:37:12,180 --> 01:37:13,582 PARTICIPANT GIVES EFFICIENTLY 2305 01:37:13,582 --> 01:37:14,583 MANAGED AND PEOPLE DON'T SEE 2306 01:37:14,583 --> 01:37:16,485 WHAT THEY DON'T WANT THEM TO 2307 01:37:16,485 --> 01:37:16,852 SEE. 2308 01:37:16,852 --> 01:37:19,888 THERE'S A QUERY TOOL THE MEAT 2309 01:37:19,888 --> 01:37:21,957 AND POTATOES OF THE ASPECT AND 2310 01:37:21,957 --> 01:37:24,526 MEDICINE WHICH IS A WAY FOR US 2311 01:37:24,526 --> 01:37:25,694 TO CAPTURE THAT SECONDARY 2312 01:37:25,694 --> 01:37:26,428 RESEARCH AND FEED THAT BACK IN 2313 01:37:26,428 --> 01:37:35,337 THE SYSTEM. 2314 01:37:35,337 --> 01:37:36,905 WE'RE USING THIS PLATFORM FOR 2315 01:37:36,905 --> 01:37:38,874 THE DATA CAPTURE, FOR THE DATA 2316 01:37:38,874 --> 01:37:40,075 STORAGE AND LATER FOR OTHER 2317 01:37:40,075 --> 01:37:46,181 PEOPLE TO DO ANALYSIS. 2318 01:37:46,181 --> 01:37:50,118 THE NEI INTENTION WITH ALL OF 2319 01:37:50,118 --> 01:37:51,453 OUR STUDIES THROUGH OUR OFFICE 2320 01:37:51,453 --> 01:37:53,321 I'M AN EVANGELIST OF DATA 2321 01:37:53,321 --> 01:37:53,555 SHARING. 2322 01:37:53,555 --> 01:37:55,190 EVERYTHING YOU DO IS MEANT TO 2323 01:37:55,190 --> 01:37:55,791 HAVE RESEARCH USE TO THE 2324 01:37:55,791 --> 01:38:04,099 BROADEST AUDIENCE POSSIBLE. 2325 01:38:04,099 --> 01:38:05,200 WITHIN THOSE CONFINES AND 2326 01:38:05,200 --> 01:38:06,835 GOVERNANCE PROCESS PEOPLE WHO 2327 01:38:06,835 --> 01:38:10,305 USE THE TOOL TO CREATE SECONDARY 2328 01:38:10,305 --> 01:38:11,640 RESEARCH USE AND WILL BE ASKED 2329 01:38:11,640 --> 01:38:13,742 TO FEED THAT BACK INTO THE 2330 01:38:13,742 --> 01:38:15,310 SYSTEM INTO THE NETWORK SO WE 2331 01:38:15,310 --> 01:38:19,114 CAN CONTINUE TO BUILD KNOWLEDGE 2332 01:38:19,114 --> 01:38:20,582 AND THERE'S STRENGTH IN NUMBERS. 2333 01:38:20,582 --> 01:38:21,483 THERE'S SO MANY RESEARCH 2334 01:38:21,483 --> 01:38:24,453 QUESTIONS FLOATED IN THE LAST 2335 01:38:24,453 --> 01:38:24,920 TWO DAYS. 2336 01:38:24,920 --> 01:38:26,588 WE NEED AS MANY HANDS ON DECK AS 2337 01:38:26,588 --> 01:38:27,322 POSSIBLE TO LOOK THROUGH THE 2338 01:38:27,322 --> 01:38:30,292 DATA AND TELL US WHAT WE FIND. 2339 01:38:30,292 --> 01:38:36,565 THAT'S THE INTENTION HERE FOR 2340 01:38:36,565 --> 01:38:36,765 BRICS. 2341 01:38:36,765 --> 01:38:42,137 AND A LOT OF THE REGISTRY IS 2342 01:38:42,137 --> 01:38:52,614 YESTERDAY TO BE DETERMINED. 2343 01:39:17,706 --> 01:39:20,041 MAYBE WE WANT MORE 2344 01:39:20,041 --> 01:39:21,042 ELECTROPHYSIOLOGIC DATA. 2345 01:39:21,042 --> 01:39:22,444 WE CAN COLLECT THAT AND MAYBE 2346 01:39:22,444 --> 01:39:25,480 FROM TEACHERS. 2347 01:39:25,480 --> 01:39:28,884 WE HEARD A LOT IN PITTSBURGH 2348 01:39:28,884 --> 01:39:31,486 FROM THE SPEECH LANGUAGE 2349 01:39:31,486 --> 01:39:32,420 PATHOLOGISTS AND THAT'S A 2350 01:39:32,420 --> 01:39:41,496 COMPONENT WE CAN ADD AS WELL. 2351 01:39:41,496 --> 01:39:44,299 WE CREATE DATA DICTIONARIES. 2352 01:39:44,299 --> 01:39:46,134 THESE ARE CONTROLLED 2353 01:39:46,134 --> 01:39:48,904 TERMINOLOGIES AND LANGUAGES. 2354 01:39:48,904 --> 01:39:50,772 WE TRY TO MAP THEM TO THINGS 2355 01:39:50,772 --> 01:39:52,741 THAT EXIST IN THE WORLD AND WE'D 2356 01:39:52,741 --> 01:39:54,576 LOVE IT HEAR FROM ALL THE 2357 01:39:54,576 --> 01:39:55,176 RESEARCHERS WHO ARE ALREADY 2358 01:39:55,176 --> 01:40:03,618 DOING THIS WORK. 2359 01:40:03,618 --> 01:40:05,053 WE WANT TO MAKE SURE WHATEVER 2360 01:40:05,053 --> 01:40:07,022 QUESTION WE'RE ASKING PEOPLE OR 2361 01:40:07,022 --> 01:40:10,325 VALUE THEY ENTER, IT'S 2362 01:40:10,325 --> 01:40:11,626 STANDARDIZED AND MACHINE 2363 01:40:11,626 --> 01:40:12,794 READABLE BECAUSE IN THE END 2364 01:40:12,794 --> 01:40:13,995 WE'LL BE COMPARING ACROSS A 2365 01:40:13,995 --> 01:40:16,631 LARGE COHORT OF PEOPLE AND 2366 01:40:16,631 --> 01:40:18,700 PERHAPS EVEN COMBINING THIS WITH 2367 01:40:18,700 --> 01:40:20,502 OTHER RESOURCES LIKE THE TBI 2368 01:40:20,502 --> 01:40:20,769 REGISTRY. 2369 01:40:20,769 --> 01:40:23,772 WE WANT TO MAKE SURE THE DATA IS 2370 01:40:23,772 --> 01:40:24,973 STRUCTURED AND ANALYZED BY 2371 01:40:24,973 --> 01:40:35,350 COMPUTERS EFFECTIVELY. 2372 01:40:35,717 --> 01:40:40,855 THE DATA REPOSITORY -- THIS IS 2373 01:40:40,855 --> 01:40:42,123 SHOWING THE PROJECTS CAN BE 2374 01:40:42,123 --> 01:40:43,091 COMBINED. 2375 01:40:43,091 --> 01:40:44,492 IN THE SCREEN SHOT WHICH IS 2376 01:40:44,492 --> 01:40:47,128 SMALL AND HARD TO READ, I 2377 01:40:47,128 --> 01:40:47,996 APOLOGIZE FOR THAT. 2378 01:40:47,996 --> 01:40:50,031 WE HAVE FOUR STUDIES. 2379 01:40:50,031 --> 01:40:52,367 THE EYE GENE PROJECT, A LASIK 2380 01:40:52,367 --> 01:40:57,305 EYE SURGERY PATIENT REPORTED 2381 01:40:57,305 --> 01:40:59,574 OUTCOMES PROJECT AND A STUDY FOR 2382 01:40:59,574 --> 01:41:00,909 AGE-RELATED MACULAR 2383 01:41:00,909 --> 01:41:02,110 DEGENERATION. 2384 01:41:02,110 --> 01:41:05,580 THEY ALL LIVE IN THE SAME ECO 2385 01:41:05,580 --> 01:41:05,814 SYSTEM. 2386 01:41:05,814 --> 01:41:07,015 IF SOMEONE HAD A QUESTION THAT 2387 01:41:07,015 --> 01:41:09,851 COULD BE APPLIED TO ALL THE 2388 01:41:09,851 --> 01:41:12,187 PROJECT THEY COULD POTENTIALLY 2389 01:41:12,187 --> 01:41:18,293 ACCESS THEM ACROSS THE PROJECTS. 2390 01:41:18,293 --> 01:41:22,263 IT SHOWS HOW BY USING A 2391 01:41:22,263 --> 01:41:23,231 CONSISTENT FRAMEWORK THEY CAN DO 2392 01:41:23,231 --> 01:41:31,539 POWERFUL RESEARCH. 2393 01:41:31,539 --> 01:41:34,275 IF ANYONE IS TECHNICALLY SAVORY 2394 01:41:34,275 --> 01:41:36,411 WE HAVE THE QUERY TOOL. 2395 01:41:36,411 --> 01:41:40,148 IT'S NICE AND USER FRIENDLY. 2396 01:41:40,148 --> 01:41:42,283 ANYONE CAN LOOK AT THE DATA. 2397 01:41:42,283 --> 01:41:47,255 THERE'S EASY DRAG AND DROP TOOLS 2398 01:41:47,255 --> 01:41:50,125 YOU DON'T NEED TO KNOW HOW TO 2399 01:41:50,125 --> 01:41:53,595 CODE IN PYTHON OR E.R. 2400 01:41:53,595 --> 01:41:56,131 WE DEVELOPED APIs TO PEOPLE CAN 2401 01:41:56,131 --> 01:41:59,567 CONNECT TO NET BOOKS AND DO HIGH 2402 01:41:59,567 --> 01:42:00,835 THROUGHPUT PROCESSING ON A MORE 2403 01:42:00,835 --> 01:42:02,203 TECHNICAL LEVEL BUT YOU DON'T 2404 01:42:02,203 --> 01:42:04,472 NEED TO. 2405 01:42:04,472 --> 01:42:06,107 SO THIS IS A VERY POWERFUL 2406 01:42:06,107 --> 01:42:16,584 FLEXIBLE TOOL FOR ALL USERS. 2407 01:42:29,698 --> 01:42:31,833 WE'LL BE SUMMARIZING AND WE HAVE 2408 01:42:31,833 --> 01:42:33,134 LIVE DASH BOARDSES. 2409 01:42:33,134 --> 01:42:34,335 IT'S PROBABLY ACCESSIBLE ON A 2410 01:42:34,335 --> 01:42:36,104 SUMMARY LEVEL TO THE PUBLIC 2411 01:42:36,104 --> 01:42:38,406 WITHIN 24 HOURS OF DATA 2412 01:42:38,406 --> 01:42:48,616 COLLECTION. 2413 01:42:51,720 --> 01:42:54,489 I'LL TURN IT BACK TO ERIKA AND 2414 01:42:54,489 --> 01:42:56,157 TAKE QUESTIONS AT THE END. 2415 01:42:56,157 --> 01:42:59,694 THANK YOU, KERRY. 2416 01:42:59,694 --> 01:43:02,130 WE'VE DISCUSSED THE IMPORTANCE 2417 01:43:02,130 --> 01:43:12,607 AND USES OF REGISTRY KERRY 2418 01:43:18,379 --> 01:43:22,183 TALKED ABOUT BRICS AND AFTER THE 2419 01:43:22,183 --> 01:43:23,418 LIED WE'LL JUMP INTO A 2420 01:43:23,418 --> 01:43:24,385 DISCUSSION WITH EVERYONE HERE TO 2421 01:43:24,385 --> 01:43:30,024 SEE WHERE WE HAVE GAP IN 2422 01:43:30,024 --> 01:43:40,535 KNOWLEDGE AND I'LL WORK WITH 2423 01:43:41,803 --> 01:43:44,139 FOLKS TO PUT TOGETHER A STEERING 2424 01:43:44,139 --> 01:43:46,741 COMMITTEE FOR THE CVI REGISTRY. 2425 01:43:46,741 --> 01:43:48,910 IT'S GOING TO INCLUDE SUBJECT 2426 01:43:48,910 --> 01:43:50,979 MATTER EXPERTS TO INCLUDE 2427 01:43:50,979 --> 01:43:51,946 RESEARCHERS, PATIENT ADVOCATES, 2428 01:43:51,946 --> 01:43:55,083 EDUCATORS WOULD WORK WITH PEOPLE 2429 01:43:55,083 --> 01:43:58,119 WITH CVI AND CLINICIANS AND 2430 01:43:58,119 --> 01:43:59,621 PATIENTS WITH CVI AND THEN THIS 2431 01:43:59,621 --> 01:44:01,623 GROUP OF PEOPLE IS GOING TO 2432 01:44:01,623 --> 01:44:03,091 PROVIDE US WITH EXPERTISE AND 2433 01:44:03,091 --> 01:44:04,559 INPUT ON THE PROJECT SO THAT WE 2434 01:44:04,559 --> 01:44:06,327 CAN MOVE FORWARD WITH MANY 2435 01:44:06,327 --> 01:44:08,129 DIFFERENT PERSPECTIVES AND 2436 01:44:08,129 --> 01:44:10,165 IDEAS. 2437 01:44:10,165 --> 01:44:10,832 THEN WITH THE STEERING COMMITTEE 2438 01:44:10,832 --> 01:44:14,135 AND WORKING GROUP AT THE 2439 01:44:14,135 --> 01:44:14,769 NATIONAL EYE INSTITUTE WE'RE 2440 01:44:14,769 --> 01:44:16,070 GOING TO IDENTIFY HOW WE'RE 2441 01:44:16,070 --> 01:44:17,639 GOING TO ENROLL PATIENTS INTO 2442 01:44:17,639 --> 01:44:21,676 THE TRIAL AND RECRUIT THEM AND 2443 01:44:21,676 --> 01:44:23,411 WE'RE GOING TO WRITE AND SUBMIT 2444 01:44:23,411 --> 01:44:25,346 RESEARCH PROTOCOL TO THE 2445 01:44:25,346 --> 01:44:27,248 INSTITUTIONAL REVIEW BOARD AND 2446 01:44:27,248 --> 01:44:29,350 THAT BOARD REVIEWS ALL RESEARCH 2447 01:44:29,350 --> 01:44:30,919 PROJECTS AND APPROVES THEM. 2448 01:44:30,919 --> 01:44:32,954 SO ONCE WE HAVE APPROVAL FROM 2449 01:44:32,954 --> 01:44:36,991 THE IRB, WE'LL BE ABLE TO BEGIN 2450 01:44:36,991 --> 01:44:37,559 ENROLLING PARTICIPANTS. 2451 01:44:37,559 --> 01:44:38,660 SO WITH THAT I WANTED TO GET 2452 01:44:38,660 --> 01:44:49,037 INTO SOME DISCUSSION. 2453 01:45:11,826 --> 01:45:13,394 THE COMMON QUESTION IS THE 2454 01:45:13,394 --> 01:45:14,062 COMMON CONDITIONS AND DIAGNOSES 2455 01:45:14,062 --> 01:45:16,965 WANT TO HEAR FROM YOU ALL WHAT'S 2456 01:45:16,965 --> 01:45:21,903 IMPORTANT LIKE BIG PICTURE 2457 01:45:21,903 --> 01:45:23,872 QUESTI 2458 01:45:23,872 --> 01:45:27,742 QUESTIONS AND WHAT THE REGISTRY 2459 01:45:27,742 --> 01:45:30,144 SHOULD EXPLORE SO FEEL FREE TO 2460 01:45:30,144 --> 01:45:31,713 COME TO THE MICROPHONE AND COME 2461 01:45:31,713 --> 01:45:42,257 ONLINE AND I'LL BE TAKING NOTES. 2462 01:45:43,491 --> 01:45:45,827 >> THANK YOU, ERIKA AND KERRY. 2463 01:45:45,827 --> 01:45:48,162 IT'S WONDERFUL WE'RE ON TIME TO 2464 01:45:48,162 --> 01:45:50,064 HAVE TIME FOR THE DISCUSSION 2465 01:45:50,064 --> 01:45:52,500 BECAUSE THE REGISTRY IS THE BIG 2466 01:45:52,500 --> 01:45:55,003 DELIVERABLE OF THE EFFORT. 2467 01:45:55,003 --> 01:45:57,238 >> THANK YOU. 2468 01:45:57,238 --> 01:46:00,642 I'M RALPH NITKEN FROM THE NIH 2469 01:46:00,642 --> 01:46:06,281 COMING FROM THE LARGER 2470 01:46:06,281 --> 01:46:09,384 REHABILITATIONEST EFFORT -- 2471 01:46:09,384 --> 01:46:11,286 REHABILITATION EFFORT WITH LISA 2472 01:46:11,286 --> 01:46:18,293 CREWS AND ONE THING THAT MADE AN 2473 01:46:18,293 --> 01:46:24,699 INTERPRETATION IS HOW LARGELY 2474 01:46:24,699 --> 01:46:26,134 UNDIAGNOSED SYSTEMS GO. 2475 01:46:26,134 --> 01:46:28,069 IF MEETINGS LIKE THIS THAT TRY 2476 01:46:28,069 --> 01:46:29,570 TO RAISE AWARENESS ARE GOING TO 2477 01:46:29,570 --> 01:46:32,874 BE EFFECTIVE HOPEFULLY THESE 2478 01:46:32,874 --> 01:46:34,242 KIDS THAT GET DIAGNOSED EARLIER 2479 01:46:34,242 --> 01:46:35,410 AND CHANGE THE RECRUITMENT 2480 01:46:35,410 --> 01:46:38,413 STRATEGIES INSTEAD OF HAVING 2481 01:46:38,413 --> 01:46:43,584 SOME KID HAVING PROBLEMS IN 2482 01:46:43,584 --> 01:46:48,489 SCHOOL AND ADOLESCENT WILL BE 2483 01:46:48,489 --> 01:46:50,525 GETTING KIDS AT THE CEREBRAL 2484 01:46:50,525 --> 01:46:53,061 PALSY END OF THINGS AND 2485 01:46:53,061 --> 01:46:54,696 HELPFULLY KIDS HAVE TREATMENTS 2486 01:46:54,696 --> 01:46:57,432 AND SUPPORT EARLIER WHICH WOULD 2487 01:46:57,432 --> 01:46:58,866 CHANGE THE THERAPEUTIC 2488 01:46:58,866 --> 01:46:59,167 TRAJECTORY. 2489 01:46:59,167 --> 01:47:00,234 THAT MIGHT BE A BIG CHANGE AND 2490 01:47:00,234 --> 01:47:02,303 THIRD OF ALL IT SOUNDS LIKE 2491 01:47:02,303 --> 01:47:03,705 THERE'S AN OVERLAP IN OTHER 2492 01:47:03,705 --> 01:47:07,709 CONDITIONS SO THAT SOME OF THESE 2493 01:47:07,709 --> 01:47:13,514 KIDS OR FAMILIES MAY BE IN OTHER 2494 01:47:13,514 --> 01:47:13,881 FAMILIES. 2495 01:47:13,881 --> 01:47:18,219 IF YOU CAN CROSS CONNECT THAT 2496 01:47:18,219 --> 01:47:19,554 MAY HELP TOO SO I WANTED TO 2497 01:47:19,554 --> 01:47:26,828 THROW OUT THOSE IDEAS. 2498 01:47:26,828 --> 01:47:30,498 >> CONNECTING IS AN IMPORTANT 2499 01:47:30,498 --> 01:47:34,102 POINT AND I CAN GOOD ON FOR 2500 01:47:34,102 --> 01:47:35,403 HOURS ABOUT THE TECHNICAL 2501 01:47:35,403 --> 01:47:36,170 CAPABILITIES AND NO ONE WANTS TO 2502 01:47:36,170 --> 01:47:39,941 HEAR THAT BUT WE HAVE IN THE 2503 01:47:39,941 --> 01:47:45,947 SYSTEM A GLOBAL UNIQUE 2504 01:47:45,947 --> 01:47:47,081 IDENTIFICATION SYSTEM AND 2505 01:47:47,081 --> 01:47:48,416 ESSENTIA 2506 01:47:48,416 --> 01:47:49,450 ESSENTIALLY WE CAN UTILIZE IT 2507 01:47:49,450 --> 01:47:53,354 FOR THE PURPOSE OF CONNECTING. 2508 01:47:53,354 --> 01:47:57,225 IT USES LIKE A DISCONNECTED 2509 01:47:57,225 --> 01:47:58,926 SERVER TO COLLECT HIGH-LEVEL 2510 01:47:58,926 --> 01:48:01,596 PATIENT IDENTIFICATION 2511 01:48:01,596 --> 01:48:02,997 INFORMATION SUCH AS YOUR FULL 2512 01:48:02,997 --> 01:48:06,067 NAME, LIKE WHERE YOUR PARENTS 2513 01:48:06,067 --> 01:48:09,771 ARE BORN AND CREATE A HASH 2514 01:48:09,771 --> 01:48:10,972 RESEARCH I.D. IF SOMEONE IS 2515 01:48:10,972 --> 01:48:15,343 USING THE SAME SERVER WE CAN USE 2516 01:48:15,343 --> 01:48:16,978 THAT AND RECORD LINKAGE THAT IS 2517 01:48:16,978 --> 01:48:18,279 GOING TO BE INCORPORATED INTO 2518 01:48:18,279 --> 01:48:25,153 THE PROCESS. 2519 01:48:25,153 --> 01:48:28,289 >> I'M FROM SEATTLE AND 2520 01:48:28,289 --> 01:48:32,126 REPRESENTING CEREBRAL PALSY 2521 01:48:32,126 --> 01:48:35,430 RESEARCH NETWORK AND AS SOMEONE 2522 01:48:35,430 --> 01:48:36,864 INVOLVED WITH INSTITUTION 2523 01:48:36,864 --> 01:48:42,870 INVOLVED WITH CYSTIC FIBROSIS TO 2524 01:48:42,870 --> 01:48:44,806 SPINA BIFIDA AND TO DOVETAIL TO 2525 01:48:44,806 --> 01:48:46,641 WHAT RALPH SAID IF YOU WANT TO 2526 01:48:46,641 --> 01:48:48,876 START EARLY DETECTION OF CVI AND 2527 01:48:48,876 --> 01:48:50,044 AWARENESS AND THIS MAY BE 2528 01:48:50,044 --> 01:48:51,212 BROADER THAN THE REGISTRY 2529 01:48:51,212 --> 01:48:53,014 QUESTIONS WE NEED TO BE IN THE 2530 01:48:53,014 --> 01:48:55,116 TRENCHES WITH WHO COULD 2531 01:48:55,116 --> 01:48:57,685 POTENTIALLY BE GETTING THE KIDS 2532 01:48:57,685 --> 01:49:03,024 TO A CVI DIAGNOSIS OR INFANTS 2533 01:49:03,024 --> 01:49:05,426 AFTER TALKING TO HI MI COLLEAGUE 2534 01:49:05,426 --> 01:49:08,129 IN THE STATE OF WASHINGTON AND 2535 01:49:08,129 --> 01:49:10,098 THE PEDIATRICIANS. 2536 01:49:10,098 --> 01:49:14,902 HOW ARE THEY BEING TRAINED TO 2537 01:49:14,902 --> 01:49:16,104 SEPARATE OUT IN CVI. 2538 01:49:16,104 --> 01:49:18,606 IS THIS GETTING THE INFORMATION 2539 01:49:18,606 --> 01:49:21,242 INTO THE RIGHT PART OF THE 2540 01:49:21,242 --> 01:49:21,442 BRAIN? 2541 01:49:21,442 --> 01:49:24,912 MY APPOINTMENT'S IN P.T. BUT IN 2542 01:49:24,912 --> 01:49:28,049 DEVELOPMENT MEDICINE. 2543 01:49:28,049 --> 01:49:29,851 WHEN I THINK ABOUT COMORBID 2544 01:49:29,851 --> 01:49:31,452 CHALLENGES THE DEVELOPMENT 2545 01:49:31,452 --> 01:49:32,920 PEDIATRICIANS ARE SCREENING FOR 2546 01:49:32,920 --> 01:49:38,126 I THINK OF THAT SUB SPECIALTY OR 2547 01:49:38,126 --> 01:49:39,460 GETTING THEM TO AN 2548 01:49:39,460 --> 01:49:43,564 OPHTHALMOLOGIST OR WHATEVER. 2549 01:49:43,564 --> 01:49:46,300 ANOTHER CAVEAT THE CP REGISTRY 2550 01:49:46,300 --> 01:49:48,669 THE CEREBRAL PALSY RESEARCH 2551 01:49:48,669 --> 01:49:51,239 NETWORK AND OTHER REGISTRIES, WE 2552 01:49:51,239 --> 01:49:53,274 DO UNCONSENTED DATA COLLECTION 2553 01:49:53,274 --> 01:49:55,176 OF CLINICAL CARE. 2554 01:49:55,176 --> 01:49:57,712 WE DON'T HAVE THAT STEP OF 2555 01:49:57,712 --> 01:49:59,547 CONSENT IN THERE BECAUSE IT'S A 2556 01:49:59,547 --> 01:50:01,749 LARGE RETROSPECTIVE CHART 2557 01:50:01,749 --> 01:50:02,116 REVIEW. 2558 01:50:02,116 --> 01:50:04,085 WE COLLECTED WHAT'S ALWAYS BEING 2559 01:50:04,085 --> 01:50:05,887 COLLECTED IN CLINICAL CARE BUT 2560 01:50:05,887 --> 01:50:08,556 THAT'S DEPENDENT ON HAVING A 2561 01:50:08,556 --> 01:50:10,091 CLASSIFICATION SYSTEM FOR THE 2562 01:50:10,091 --> 01:50:10,491 DIAGNOSIS. 2563 01:50:10,491 --> 01:50:11,425 WE'RE FORTUNATE ENOUGH IN 2564 01:50:11,425 --> 01:50:14,061 CEREBRAL PALSY. 2565 01:50:14,061 --> 01:50:16,831 WE HAVE MULTIPLE CLASSIFICATIONS 2566 01:50:16,831 --> 01:50:20,501 SYSTEMS THAT ARE ALREADY 2567 01:50:20,501 --> 01:50:26,107 VALIDATED GROSS MOTOR, FINE 2568 01:50:26,107 --> 01:50:27,808 MOTOR, FEEDING COMMUNICATION AND 2569 01:50:27,808 --> 01:50:30,678 HOW DO WE KNOW WHAT CLASS AND 2570 01:50:30,678 --> 01:50:32,146 WHAT ALSO DO THEY HAVE THAT'S 2571 01:50:32,146 --> 01:50:33,614 THE COMORBIDITY OF THE 2572 01:50:33,614 --> 01:50:35,917 FUNCTIONAL OUTCOME OF THE FAMILY 2573 01:50:35,917 --> 01:50:36,551 WITH CVI IS EXPERIENCE. 2574 01:50:36,551 --> 01:50:37,185 THANK YOU. 2575 01:50:37,185 --> 01:50:37,952 THIS IS AMAZING. 2576 01:50:37,952 --> 01:50:45,960 YOU GUYS ARE AWESOME. 2577 01:50:45,960 --> 01:50:48,496 >> I THINK WE HAVE A LOT OF 2578 01:50:48,496 --> 01:50:49,997 LESSONS LEARNED FROM THE CVI 2579 01:50:49,997 --> 01:50:51,799 COMMUNITY AND WILL BE 2580 01:50:51,799 --> 01:50:54,969 COLLABORATING AND GETTING INPUT 2581 01:50:54,969 --> 01:50:57,138 FROM THE COMMUNITY. 2582 01:50:57,138 --> 01:50:59,907 AS FAR AS EARLY DIAGNOSIS I'M 2583 01:50:59,907 --> 01:51:01,909 HOPEFUL THERE WERE DEFINITION 2584 01:51:01,909 --> 01:51:07,148 DISSEMINATED AND WILL HELP TO 2585 01:51:07,148 --> 01:51:10,351 BRING AWARENESS TO PROVIDERS SO 2586 01:51:10,351 --> 01:51:14,121 THE EARLY DIAGNOSIS CAN BE 2587 01:51:14,121 --> 01:51:21,162 ADDRESSED. 2588 01:51:21,162 --> 01:51:24,098 >> THIS GOES BACK TO WHAT JOHN 2589 01:51:24,098 --> 01:51:24,732 PRESENTED. 2590 01:51:24,732 --> 01:51:30,271 I'M AFRAID FOR UNDER REPRESENTED 2591 01:51:30,271 --> 01:51:37,311 GROUPS MOST THE FAMILY ADVOCACY 2592 01:51:37,311 --> 01:51:40,581 THAT HAS GONE ON IS NOT 2593 01:51:40,581 --> 01:51:41,182 REPRESENTATIVE OF A LOT OF 2594 01:51:41,182 --> 01:51:43,718 CHILDREN WITH CVI AND THE 2595 01:51:43,718 --> 01:51:46,287 SCOTLAND AND BRITISH LITERATURE 2596 01:51:46,287 --> 01:51:50,391 WE QUOTED ABOUT CVI. 2597 01:51:50,391 --> 01:51:53,928 AND I DON'T THINK THAT JUST 2598 01:51:53,928 --> 01:51:58,065 HAPPENS IN SCOTLAND AND ENGLAND. 2599 01:51:58,065 --> 01:51:59,000 I THINK IT HAPPENS EVERYWHERE. 2600 01:51:59,000 --> 01:52:01,736 I KNOW YOU'RE GOING TO DO THAT 2601 01:52:01,736 --> 01:52:02,470 BECAUSE YOU WILL. 2602 01:52:02,470 --> 01:52:03,004 YOU'RE GOOD. 2603 01:52:03,004 --> 01:52:09,176 YOU'RE GOING TO DO THAT BUT I 2604 01:52:09,176 --> 01:52:11,779 WANT US TO ALL BE THINKING ABOUT 2605 01:52:11,779 --> 01:52:20,421 THAT AND CAPTURE. 2606 01:52:20,421 --> 01:52:22,223 >> THE BIGGEST CHALLENGE I SEE 2607 01:52:22,223 --> 01:52:25,226 FOR THE REGISTRY IS CAPTURING 2608 01:52:25,226 --> 01:52:26,127 THE RIGHT POPULATION. 2609 01:52:26,127 --> 01:52:28,162 THAT NOT ONLY IS MEETING THEM 2610 01:52:28,162 --> 01:52:31,465 WHERE THEY ARE BUT WHAT IS 2611 01:52:31,465 --> 01:52:35,403 INCLUSION, EXCLUSION AND WHO 2612 01:52:35,403 --> 01:52:36,137 DEFINES IT. 2613 01:52:36,137 --> 01:52:40,141 THAT PART ERIKA WILL SEEK INPUT 2614 01:52:40,141 --> 01:52:45,880 AND HAVE A STEERING COMMITTEE TO 2615 01:52:45,880 --> 01:52:48,249 HELP INFORM THAT BECAUSE WE 2616 01:52:48,249 --> 01:52:49,784 COULD MAKE THE WRONG DECISION IF 2617 01:52:49,784 --> 01:52:51,152 WE DON'T TAKE IN EVERYONE'S 2618 01:52:51,152 --> 01:52:51,385 OPINION. 2619 01:52:51,385 --> 01:52:55,156 I'M EXCITED ABOUT THE BECAUSE IT 2620 01:52:55,156 --> 01:53:01,262 DOES MIMIC EYE GENES AND PEOPLE 2621 01:53:01,262 --> 01:53:04,332 OFTEN MISDIAGNOSED. 2622 01:53:04,332 --> 01:53:05,766 WE LOOKED AT HOW FAR PEOPLE WENT 2623 01:53:05,766 --> 01:53:08,769 TO ENROLL IN OUR STUDY AND THE 2624 01:53:08,769 --> 01:53:11,072 AVERAGE WAS 400 MILES. 2625 01:53:11,072 --> 01:53:18,279 SO I DON'T KNOW CONVERSION TO 2626 01:53:18,279 --> 01:53:27,455 KILOMETERS -- IT WAS A 2627 01:53:27,455 --> 01:53:27,888 TESTAMENT. 2628 01:53:27,888 --> 01:53:30,257 JUST TO SAY WE CREATED THE 2629 01:53:30,257 --> 01:53:32,026 RESOURCE TO MEET PEOPLE WHERE 2630 01:53:32,026 --> 01:53:34,295 THEY WERE BUT PEOPLE STILL HAD 2631 01:53:34,295 --> 01:53:35,963 TO GO FAR TO FIND SPECIALIST. 2632 01:53:35,963 --> 01:53:38,299 WE LOOKED AT THE AVAILABILITY OF 2633 01:53:38,299 --> 01:53:40,501 EYE CARE PROVIDERS FOR THAT 2634 01:53:40,501 --> 01:53:41,869 GROUP TOO AND YOU SAW THE PEOPLE 2635 01:53:41,869 --> 01:53:43,204 WOULD TRAVELED THE FURTHEST CAME 2636 01:53:43,204 --> 01:53:49,343 FROM PLACES WITHOUT PROVIDERS. 2637 01:53:49,343 --> 01:53:50,911 SO THERE'S A LOT OF WORK TO 2638 01:53:50,911 --> 01:53:53,013 THERE AND WE CAN'T FIX THE 2639 01:53:53,013 --> 01:53:53,981 PROBLEM BUT WE AT LEAST SHOW 2640 01:53:53,981 --> 01:53:54,448 IT'S A PROBLEM. 2641 01:53:54,448 --> 01:53:58,219 I'M LOOKING FORWARD TO THAT AND 2642 01:53:58,219 --> 01:54:02,757 WE PLAN TO CAPTURE LOCATION OF 2643 01:54:02,757 --> 01:54:04,091 RESIDENTS KIND OF INFORMATION, 2644 01:54:04,091 --> 01:54:05,025 SOCIAL DETERMINATES OF HEALTH. 2645 01:54:05,025 --> 01:54:08,896 WE HAVE THE ADI, AREA 2646 01:54:08,896 --> 01:54:09,764 DEPRIVATION INDEX SO LOOKING 2647 01:54:09,764 --> 01:54:17,505 ACROSS THAT AND LOOKING AT 2648 01:54:17,505 --> 01:54:18,305 PROVIDER SHORTAGES AND GETTING 2649 01:54:18,305 --> 01:54:18,939 YOU MORE INFORMATION TO ADVOCATE 2650 01:54:18,939 --> 01:54:23,310 ON. 2651 01:54:23,310 --> 01:54:28,682 >> I'M STEPHANIE DUCING TO SPEAK 2652 01:54:28,682 --> 01:54:30,885 FOR 1 IN 30 STUDENTS WHO HAVE 2653 01:54:30,885 --> 01:54:32,286 CVI AND NOT DIAGNOSED. 2654 01:54:32,286 --> 01:54:35,456 MY SON WAS REPEATEDLY 2655 01:54:35,456 --> 01:54:37,558 MISDIAGNOSED UNTIL 15 YEARS OLD. 2656 01:54:37,558 --> 01:54:43,097 HIS FORM OF CVI IS AN ENTIRELY 2657 01:54:43,097 --> 01:54:46,133 INVISIBLE DISABILITY AND CAN'T 2658 01:54:46,133 --> 01:54:47,401 TELL HE'S ALMOST BLIND 2659 01:54:47,401 --> 01:54:51,772 PHYSICALLY OR ACADEMICALLY OR 2660 01:54:51,772 --> 01:54:53,140 SOCIALLY. 2661 01:54:53,140 --> 01:54:54,675 WE WENT THROUGH A NIGHTMARE 2662 01:54:54,675 --> 01:54:57,745 GETTING HIS DIAGNOSED FOR 2663 01:54:57,745 --> 01:55:00,481 $150,000 IN MEDICAL BILLS AND A 2664 01:55:00,481 --> 01:55:01,849 TRIP TO PARIS FOR A SPECIALIST. 2665 01:55:01,849 --> 01:55:04,051 IT WAS A NIGHTMARE. 2666 01:55:04,051 --> 01:55:06,587 IT'S UNACCEPTABLE AND HAS TO 2667 01:55:06,587 --> 01:55:06,821 CHANGE. 2668 01:55:06,821 --> 01:55:10,090 WE CANNOT CONTINUE TO USE 2669 01:55:10,090 --> 01:55:11,592 OUTDATED STEREOTYPES OF WHAT 2670 01:55:11,592 --> 01:55:12,259 PEOPLE WITH CVI SUPPOSEDLY LOOK 2671 01:55:12,259 --> 01:55:17,498 LIKE. 2672 01:55:17,498 --> 01:55:19,767 WE CANNOT TREAT PEOPLE WITH CVI 2673 01:55:19,767 --> 01:55:21,969 ADDS UNBELIEVABLE LIARS WHICH IS 2674 01:55:21,969 --> 01:55:25,406 THE WAY OUR FAMILY WAS TREATED. 2675 01:55:25,406 --> 01:55:27,341 I'M HERE TO SAY I'M GLAD TO SEE 2676 01:55:27,341 --> 01:55:27,875 EVERYONE WORKING TOGETHER 2677 01:55:27,875 --> 01:55:31,612 FINALLY ON THIS. 2678 01:55:31,612 --> 01:55:34,281 I WORK ROUTINELY WITH FAMILIES 2679 01:55:34,281 --> 01:55:39,153 LIKE MYSELF WHO HAVE CHILDREN 2680 01:55:39,153 --> 01:55:40,488 TEENAGERS WHO ARE DENIED A 2681 01:55:40,488 --> 01:55:42,690 DIAGNOSIS AND DENIED ACCESS TO 2682 01:55:42,690 --> 01:55:43,657 EDUCATION AND BRAILLE. 2683 01:55:43,657 --> 01:55:52,032 THEY ARE DENIED ACCESS TO 2684 01:55:52,032 --> 01:55:53,300 MOBILITY MY SON WOULD BE DEAD 2685 01:55:53,300 --> 01:55:55,402 NOW IF WE HAD LISTENED TO WHAT 2686 01:55:55,402 --> 01:56:00,274 SOME OF THE BEST IN THE UNITED 2687 01:56:00,274 --> 01:56:04,678 STATES TOLD US THAT WE SHOULDN'T 2688 01:56:04,678 --> 01:56:07,948 ENROLL OUR SON AND PUT HIM ON 2689 01:56:07,948 --> 01:56:11,719 ANTIDEPRESSANTS TO CURE HIS 2690 01:56:11,719 --> 01:56:11,986 BLINDNESS. 2691 01:56:11,986 --> 01:56:16,123 IT'S UNACCEPTABLE AND WE HAVE TO 2692 01:56:16,123 --> 01:56:19,426 CHANGE AND WITH 1 IN 30 CHILDREN 2693 01:56:19,426 --> 01:56:25,799 HAVING SYMPTOMS BUT THE MAST 2694 01:56:25,799 --> 01:56:27,902 MAJORITY LOOK LIKE MY SON AND 2695 01:56:27,902 --> 01:56:30,170 NOT SOME OUTDATED STEREOTYPE. 2696 01:56:30,170 --> 01:56:32,139 WE HAVE TO START BELIEVING THE 2697 01:56:32,139 --> 01:56:34,308 EXPERIENCES OF PEOPLE WHO HAVE 2698 01:56:34,308 --> 01:56:35,242 CVI. 2699 01:56:35,242 --> 01:56:37,711 AND LISTEN TO WHAT THEY SAY. 2700 01:56:37,711 --> 01:56:41,949 WHEN WE SAY WHY DO DIAGNOSTIC 2701 01:56:41,949 --> 01:56:43,117 PRACTICES VARY? 2702 01:56:43,117 --> 01:56:46,287 WE HAVE A SUBSET OF DOCTORS WHO 2703 01:56:46,287 --> 01:56:47,688 BELIEVE PEOPLE WITH CVI AND THEN 2704 01:56:47,688 --> 01:56:50,124 AS THE EVERYBODY ELSE. 2705 01:56:50,124 --> 01:57:00,301 THANK YOU. 2706 01:57:02,570 --> 01:57:07,775 I WANT TO MAKE A PITCH FOR TWO 2707 01:57:07,775 --> 01:57:08,008 THINGS. 2708 01:57:08,008 --> 01:57:09,677 THE ADAGE IF YOU CAN'T MEASURE 2709 01:57:09,677 --> 01:57:11,111 IT, YOU CAN'T STUDY IS AT THE 2710 01:57:11,111 --> 01:57:12,479 HEART OF WHAT I'M GOING TO SAY 2711 01:57:12,479 --> 01:57:17,051 AND FOLLOWS UP ON WHAT WE JUST 2712 01:57:17,051 --> 01:57:17,451 HEARD. 2713 01:57:17,451 --> 01:57:20,254 IT'S NOT JUST PEOPLE AREN'T BE 2714 01:57:20,254 --> 01:57:25,225 LIST SKENED TO BUT DON'T BRING 2715 01:57:25,225 --> 01:57:27,962 BEAR THE BEST TOOLS TO QUANTIFY. 2716 01:57:27,962 --> 01:57:30,297 I'LL MAKE A PITCH FOR TWO 2717 01:57:30,297 --> 01:57:31,198 THINGS. 2718 01:57:31,198 --> 01:57:34,301 ONE IS WE THE BEST 2719 01:57:34,301 --> 01:57:34,902 QUANTIFICATION POSSIBLE TO DO 2720 01:57:34,902 --> 01:57:45,012 THIS. 2721 01:57:48,582 --> 01:57:52,953 IF NOT IT GOES TO WHO WANTS TO 2722 01:57:52,953 --> 01:57:55,122 BRING THIS AND NEED TO MEASURE 2723 01:57:55,122 --> 01:57:58,525 AND USING THE BEST MEASURES 2724 01:57:58,525 --> 01:58:01,495 POSSIBLE AND TO UPDATE KNOWS AS 2725 01:58:01,495 --> 01:58:02,296 NEW ONES EMERGE. 2726 01:58:02,296 --> 01:58:04,698 SECOND IS WE HAVE TO DO IT 2727 01:58:04,698 --> 01:58:04,999 REPEATEDLY. 2728 01:58:04,999 --> 01:58:07,668 SINGLE MEASURES WON'T DO 2729 01:58:07,668 --> 01:58:09,036 ANYTHING HERE. 2730 01:58:09,036 --> 01:58:12,973 BECAUSE ANY MEASURE ANYWHERE CAN 2731 01:58:12,973 --> 01:58:13,641 BE USED FOR SOMETHING OR NOTHING 2732 01:58:13,641 --> 01:58:16,377 DEPENDING ON THE CIRCUMSTANCES. 2733 01:58:16,377 --> 01:58:17,745 THE REPEATED MEASURE IS 2734 01:58:17,745 --> 01:58:22,249 IMPORTANT PARTICULARLY FOR 2735 01:58:22,249 --> 01:58:26,120 SOMEONE WITH CVI BECAUSE IT'S 2736 01:58:26,120 --> 01:58:29,623 NOT JUST A VISUAL PROBLEM BUT A 2737 01:58:29,623 --> 01:58:34,495 DEVELOPMENT ANGLE TO IT. 2738 01:58:34,495 --> 01:58:37,364 ONE OF THE THINGS IS ABOUT 2739 01:58:37,364 --> 01:58:39,733 CHILDREN THEY DEVELOP AND CHANGE 2740 01:58:39,733 --> 01:58:42,236 A LOT OF EVEN THOSE WITH BRAIN 2741 01:58:42,236 --> 01:58:42,503 INJURIES. 2742 01:58:42,503 --> 01:58:44,371 IF WE CAN'T DISTINGUISH THE 2743 01:58:44,371 --> 01:58:46,273 NORMAL CHANGE FROM WHAT CVI IS 2744 01:58:46,273 --> 01:58:49,243 AND HOW IT'S MANIFESTING THE 2745 01:58:49,243 --> 01:58:51,912 TREATMENT WILL END UP MIRED IN A 2746 01:58:51,912 --> 01:58:55,549 LOT OF VARIABILITY. 2747 01:58:55,549 --> 01:58:59,286 IT'S IMPORTANT WE USE REALLY 2748 01:58:59,286 --> 01:59:02,122 OBJECTIVE QUANTIFICATIONS OF THE 2749 01:59:02,122 --> 01:59:06,293 THINGS WE'RE MEASURES GOING INTO 2750 01:59:06,293 --> 01:59:16,403 THIS 2751 01:59:19,306 --> 01:59:25,045 >> I'M FULLY ON BOARD WITH 2752 01:59:25,045 --> 01:59:30,284 STANDARDIZATION AND QUALITY AND 2753 01:59:30,284 --> 01:59:33,687 REDUCING MAKING THINGS OF OUR 2754 01:59:33,687 --> 01:59:34,088 OWN. 2755 01:59:34,088 --> 01:59:35,355 YOU SEE WE'RE CONSISTENT AND 2756 01:59:35,355 --> 01:59:45,766 TRYING TO WORK GLOBELY. 2757 01:59:46,066 --> 01:59:48,235 THIS IS A PROFIT THAT WILL 2758 01:59:48,235 --> 01:59:50,304 INVOLVE MANY INSTITUTES AND 2759 01:59:50,304 --> 01:59:51,572 CENTERS AND GLOBAL 2760 01:59:51,572 --> 01:59:51,905 COLLABORATORS. 2761 01:59:51,905 --> 01:59:56,910 I HEAR YOU LOUD AND CLEAR. 2762 02:00:00,914 --> 02:00:01,782 >> I'M FROM WASHINGTON STATE AND 2763 02:00:01,782 --> 02:00:12,126 EXCITED TO BE HERE TODAY. 2764 02:00:12,126 --> 02:00:14,428 I WOULD LOOK TO US TO HAVE SOME 2765 02:00:14,428 --> 02:00:17,765 SPECIFIC QUESTIONS ABOUT 2766 02:00:17,765 --> 02:00:19,700 EDUCATIONAL PLACEMENT AND AGAIN 2767 02:00:19,700 --> 02:00:24,171 SELFISHLY THINGS THAT CAN DERIVE 2768 02:00:24,171 --> 02:00:25,539 FUNDING TO DRIVE OUR TEACHER 2769 02:00:25,539 --> 02:00:26,740 TRAINING AND EDUCATIONAL 2770 02:00:26,740 --> 02:00:29,042 PLACEMENT AND ALSO SERVICES, 2771 02:00:29,042 --> 02:00:31,145 CONSIDERATION AND WHAT SERVICES 2772 02:00:31,145 --> 02:00:35,983 HAVE YOUR CHILD RECEIVE WHAT IS 2773 02:00:35,983 --> 02:00:36,750 THEIR SCHOOL SETTING LIKE 2774 02:00:36,750 --> 02:00:38,118 BECAUSE THOSE ARE IMPORTANT 2775 02:00:38,118 --> 02:00:40,420 THINGS AND IF WE CAN FIT THOSE 2776 02:00:40,420 --> 02:00:41,822 IN THERE SOMEHOW THAT'S 2777 02:00:41,822 --> 02:00:42,723 INFORMATION THAT WILL BE 2778 02:00:42,723 --> 02:00:44,124 BENEFICIAL FOR US AS WELL. 2779 02:00:44,124 --> 02:00:53,834 THANK YOU. 2780 02:00:53,834 --> 02:00:57,237 >> SKIP LIGE HERE. 2781 02:00:57,237 --> 02:00:58,772 HOW DOES A REGISTRY LIKE THIS 2782 02:00:58,772 --> 02:01:00,207 EVOLVE AND CHANGE OVER TIME? 2783 02:01:00,207 --> 02:01:01,575 AS TIME GOES ON OUR QUESTIONS 2784 02:01:01,575 --> 02:01:03,110 ARE GOING TO CHANGE AND DATA 2785 02:01:03,110 --> 02:01:04,178 POINTS MAY CHANGE. 2786 02:01:04,178 --> 02:01:04,912 WHAT'S THE PROCESS FOR ACHIEVING 2787 02:01:04,912 --> 02:01:13,854 CHANGE OVER TIME. 2788 02:01:13,854 --> 02:01:15,722 >> WE HEARD HOW WE WANT TO 2789 02:01:15,722 --> 02:01:16,356 UPDATE OUR DATA COLLECTION 2790 02:01:16,356 --> 02:01:26,867 POINTS AS WE LEARN NEW THINGS 2791 02:01:28,468 --> 02:01:30,270 HEAR LEARNING WHAT IS USEFUL AND 2792 02:01:30,270 --> 02:01:33,407 WHAT MEASURES ARE LEADING US TO 2793 02:01:33,407 --> 02:01:38,412 BETTER OUTCOME AND WE'LL BE ABLE 2794 02:01:38,412 --> 02:01:42,783 TO UPDATE QUESTIONS AND I THINK 2795 02:01:42,783 --> 02:01:49,489 OUR SYSTEM WILL ALLOW ARE US TO 2796 02:01:49,489 --> 02:01:54,628 INCLUDE OLDER DATA DATA AND MAP 2797 02:01:54,628 --> 02:02:00,367 IT TO PEOPLE CAN QUERY IN A WAY 2798 02:02:00,367 --> 02:02:04,204 THAT MAKES SENSE 2799 02:02:04,204 --> 02:02:08,809 >> WE CAN AND DO PLAN TO 2800 02:02:08,809 --> 02:02:13,747 COLLECTION INFORMATION OVER TIME 2801 02:02:13,747 --> 02:02:16,216 AND FROM DIFFERENT USERS. 2802 02:02:16,216 --> 02:02:19,186 THE PEOPLE ENTERING INFORMATION 2803 02:02:19,186 --> 02:02:22,623 IN THE SYSTEM IT'S PEOPLE LIKE 2804 02:02:22,623 --> 02:02:25,192 YOU AND THE BEAUTY OF FOLLOWING 2805 02:02:25,192 --> 02:02:27,561 A SIMILAR PROCESS TO WHAT WE 2806 02:02:27,561 --> 02:02:30,831 HAVE IN EYE GENE IS WE CREATED A 2807 02:02:30,831 --> 02:02:33,100 NICE WAY TO RECONNECT WITH 2808 02:02:33,100 --> 02:02:34,101 PEOPLE. 2809 02:02:34,101 --> 02:02:35,702 IF WE SEE SOME PATTERN IN A 2810 02:02:35,702 --> 02:02:40,574 GROUP OF PEOPLE WITH A CERTAIN 2811 02:02:40,574 --> 02:02:41,742 CONSTELLATION OF EXPERIENCES OR 2812 02:02:41,742 --> 02:02:44,411 COMORBIDITIES WE CAN TARGET THEM 2813 02:02:44,411 --> 02:02:46,046 FOR MORE SPECIFIC DATA 2814 02:02:46,046 --> 02:02:46,947 COLLECTION OR INFORMATION AND 2815 02:02:46,947 --> 02:02:53,253 INTERVIEWS AND SO -- 2816 02:02:53,253 --> 02:02:55,923 >> SO WE ALSO WANTED TO TALK 2817 02:02:55,923 --> 02:02:58,125 ABOUT WHAT FUTURE USE CASES 2818 02:02:58,125 --> 02:03:03,163 MIGHT RESEARCHERS PROPOSE 2819 02:03:03,163 --> 02:03:06,667 BECAUSE THIS IS GOING TO HELP 2820 02:03:06,667 --> 02:03:11,738 GUIDE US AND AN IMPORTANT 2821 02:03:11,738 --> 02:03:13,473 FEATURE OF THE REGISTRY IS THAT 2822 02:03:13,473 --> 02:03:16,143 PEOPLE WILL USE IT FOR SECONDARY 2823 02:03:16,143 --> 02:03:16,410 RESEARCH. 2824 02:03:16,410 --> 02:03:22,282 SO IF THERE'S ANY IMPORTANT 2825 02:03:22,282 --> 02:03:24,217 QUESTIONS PEOPLE HAVE THEY WANT 2826 02:03:24,217 --> 02:03:28,055 RESEARCHERS TO EXPLORE COME UP 2827 02:03:28,055 --> 02:03:28,689 TO THE MICROPHONES FOR COMMENTS 2828 02:03:28,689 --> 02:03:38,932 OR QUESTIONS. 2829 02:03:46,340 --> 02:03:48,709 >> I JUST PUT UP A FEW OF 2830 02:03:48,709 --> 02:03:49,443 SOMEONE JUST LEARNING ABOUT CVI 2831 02:03:49,443 --> 02:03:54,648 OVER THE COURSE OF PLANNING FOR 2832 02:03:54,648 --> 02:04:00,253 THIS WORKSHOP ASKED AND I PUT 2833 02:04:00,253 --> 02:04:01,888 EXPLORE AGE OF DIAGNOSIS IN 2834 02:04:01,888 --> 02:04:07,260 RELATION TO OUTCOME OF INTEREST. 2835 02:04:07,260 --> 02:04:17,804 MAYBE THAT'S EDUCATIONAL LEVEL 2836 02:04:20,941 --> 02:04:23,377 OR OUTCOMES AND ASSOCIATION OF 2837 02:04:23,377 --> 02:04:31,651 MRI FINDINGS AND CVI PHASE. 2838 02:04:31,651 --> 02:04:33,053 THERE'S NOT A LOT OF EVIDENCE 2839 02:04:33,053 --> 02:04:39,326 THERE SO WE'LL SCRATCH THAT AND 2840 02:04:39,326 --> 02:04:49,870 I SAID PREVALENCE OF IMPAIRMENTS 2841 02:04:52,706 --> 02:04:53,306 AND COMORBIDITIES. 2842 02:04:53,306 --> 02:05:00,981 >> I ALWAYS LIKE TO THINK HOW WE 2843 02:05:00,981 --> 02:05:02,682 CAN GET EARLY WINS. 2844 02:05:02,682 --> 02:05:08,121 IF WE CAN PHRASE FIVE REALLY 2845 02:05:08,121 --> 02:05:10,524 INTERESTING QUESTIONS THE 2846 02:05:10,524 --> 02:05:11,792 REGISTRY OF THIS WORK CAN 2847 02:05:11,792 --> 02:05:12,159 ANSWER. 2848 02:05:12,159 --> 02:05:16,496 CAN WE DO THAT AS A START 2849 02:05:16,496 --> 02:05:18,098 LEADING TO FIVE MORE QUESTIONS 2850 02:05:18,098 --> 02:05:23,837 AND HEAR WHAT ARE THE FIVE 2851 02:05:23,837 --> 02:05:27,040 QUESTIONS AND I PROPOSE AT THIS 2852 02:05:27,040 --> 02:05:29,876 STAGE BECAUSE THERE'S SO MUCH 2853 02:05:29,876 --> 02:05:31,211 UNCERTAINTY THEIR SIMPLE LIKE 2854 02:05:31,211 --> 02:05:32,479 AGE OF ONSET VERSUS DIAGNOSIS. 2855 02:05:32,479 --> 02:05:34,281 WE CAN ANSWER THAT IN A YEAR'S 2856 02:05:34,281 --> 02:05:40,987 TIME. 2857 02:05:40,987 --> 02:05:42,155 WHAT ARE FIVE SIMPLE QUESTIONS 2858 02:05:42,155 --> 02:05:52,132 WE CAN ANSWER TO GET US GOING? 2859 02:05:52,132 --> 02:05:54,267 >> I DON'T KNOW ABOUT FIVE BUT I 2860 02:05:54,267 --> 02:06:04,578 CAN GIVE YOU ONE. 2861 02:06:09,082 --> 02:06:10,750 I THINK INTERVENTIONS AND 2862 02:06:10,750 --> 02:06:13,420 UNDERSTAND WHO IS GETTING IT IS 2863 02:06:13,420 --> 02:06:15,889 AN IMPORTANT THING TO ADD TO THE 2864 02:06:15,889 --> 02:06:26,066 REGISTRY. 2865 02:07:00,967 --> 02:07:02,636 >> FOR ALL THE PANEL MEMBERS, 2866 02:07:02,636 --> 02:07:08,141 WHO SHOULD BE CONTRIBUTING AND 2867 02:07:08,141 --> 02:07:16,516 CAN YOU THINK ABOUT A 2868 02:07:16,516 --> 02:07:19,152 CONTRIBUTIONS AND WHERE IT COMES 2869 02:07:19,152 --> 02:07:19,352 FROM? 2870 02:07:19,352 --> 02:07:20,987 >> THE MORE I HEAR ABOUT WE 2871 02:07:20,987 --> 02:07:26,626 DON'T EVEN HAVE A REAL GOOD 2872 02:07:26,626 --> 02:07:29,229 DEFINITION I'D LIKE TO HAVE 2873 02:07:29,229 --> 02:07:31,031 INPUTS FROM DIFFERENT PEOPLE AND 2874 02:07:31,031 --> 02:07:31,798 PROVIDERS AS WELL AS FAMILY 2875 02:07:31,798 --> 02:07:41,274 MEMBERS AND EDUCATORS. 2876 02:07:41,274 --> 02:07:44,144 THOSE ARE THREE BIG AREAS AND I 2877 02:07:44,144 --> 02:07:45,612 THINK EVERYONE HAS A DIFFERENT 2878 02:07:45,612 --> 02:07:46,546 PERSPECTIVE WE SHOULD BE 2879 02:07:46,546 --> 02:07:46,846 COLLECTING. 2880 02:07:46,846 --> 02:07:54,054 >> THANK YOU. 2881 02:07:54,054 --> 02:07:55,355 >> I THINK IT'S IMPORTANT TO GET 2882 02:07:55,355 --> 02:08:00,594 INFORMATION OUT TO WHAT 2883 02:08:00,594 --> 02:08:03,897 STRATEGIES WORK AND DON'T WORK 2884 02:08:03,897 --> 02:08:05,565 AND WHICH WORK FOR WHICH 2885 02:08:05,565 --> 02:08:06,833 PATIENTS IS A BROAD 2886 02:08:06,833 --> 02:08:07,200 CLASSIFICATION. 2887 02:08:07,200 --> 02:08:15,575 I ALSO WANT TO ECHO THE ROLE OF 2888 02:08:15,575 --> 02:08:18,745 INTERVENTION AND NEUROPLASTICITY 2889 02:08:18,745 --> 02:08:21,915 AND THROW IN A CAUTIONARY NOTE 2890 02:08:21,915 --> 02:08:23,717 ABOUT THE REGISTRIES ALWAYS 2891 02:08:23,717 --> 02:08:28,121 COLLECT GENETIC INFORMATION AND 2892 02:08:28,121 --> 02:08:31,324 INFORMATION ABOUT MRI OF THE 2893 02:08:31,324 --> 02:08:33,893 OPTIC NERVE AND WITH THE 2894 02:08:33,893 --> 02:08:35,428 STRATEGY YOU'LL GET CHEAP 2895 02:08:35,428 --> 02:08:37,731 POSITIVE RESULTS BUT IT'S NOT 2896 02:08:37,731 --> 02:08:38,898 REALLY HELPING THE FAMILIES. 2897 02:08:38,898 --> 02:08:40,867 I DON'T KNOW HOW YOU CAN KEEP IT 2898 02:08:40,867 --> 02:08:50,143 FOCUSSED ON WHAT MATTERS TO THE 2899 02:08:50,143 --> 02:08:51,244 FAMILIES AND KEEP FOCUSSED ON 2900 02:08:51,244 --> 02:08:53,046 WHAT WORKS AND WHAT PROGRESS YOU 2901 02:08:53,046 --> 02:08:53,246 HAVE. 2902 02:08:53,246 --> 02:08:59,886 >> WHEN YOU SAY STRATEGIES 2903 02:08:59,886 --> 02:09:02,122 DIAGNOSTIC STRATEGIES OR BOTH? 2904 02:09:02,122 --> 02:09:10,030 >> AVAILABLE FOR RESEARCHERS SO 2905 02:09:10,030 --> 02:09:11,865 I THINK KEEP YOU'RE EYES ON THE 2906 02:09:11,865 --> 02:09:12,265 PRIZE. 2907 02:09:12,265 --> 02:09:18,038 WHAT'S THE IMPACT OF EARLY 2908 02:09:18,038 --> 02:09:21,274 INTERVENTION IS POSITIVE YOU CAN 2909 02:09:21,274 --> 02:09:23,109 GO TO GENETICS. 2910 02:09:23,109 --> 02:09:27,013 I THINK YOU MAY GET FALSE 2911 02:09:27,013 --> 02:09:29,949 POSITIVES AND EVEN WITH IMAGING 2912 02:09:29,949 --> 02:09:34,287 YOU'LL GET CORRELATIONS BUT ONLY 2913 02:09:34,287 --> 02:09:44,731 IN THE FACT THEY HAVE CVI. 2914 02:09:48,201 --> 02:09:48,902 >> IN THE LIST OF PEOPLE 2915 02:09:48,902 --> 02:09:54,074 INVOLVED IN INPUT I THINK IT'S 2916 02:09:54,074 --> 02:09:56,076 PROBABLY IMPLIED BUT TO BE SURE 2917 02:09:56,076 --> 02:10:01,481 THOSE WHO HAD PARTICULARLY THE 2918 02:10:01,481 --> 02:10:10,390 EXPERIENCE OF CVI THAT WON'T FIT 2919 02:10:10,390 --> 02:10:12,325 INTO WHAT THOSE HAVE LANGUAGE 2920 02:10:12,325 --> 02:10:14,761 FOR AND IT SEEMS LIKE A 2921 02:10:14,761 --> 02:10:16,262 DIFFICULTY IN PUBLICIZING AS 2922 02:10:16,262 --> 02:10:17,197 WELL AS BRINGING PEOPLE TOGETHER 2923 02:10:17,197 --> 02:10:21,334 IN A MORE UNIFIED FASHION IS SO 2924 02:10:21,334 --> 02:10:23,770 MANY -- THAT ELEPHANT PICTURE, 2925 02:10:23,770 --> 02:10:24,337 SO MANY WAYS AND OF NAMING 2926 02:10:24,337 --> 02:10:31,010 THINGS. 2927 02:10:31,010 --> 02:10:33,446 WE WANT TO HAVE THE EXPERIENTIAL 2928 02:10:33,446 --> 02:10:35,181 INPUT AS WELL. 2929 02:10:35,181 --> 02:10:38,118 ONE OTHER THOUGHT A COMPLETELY 2930 02:10:38,118 --> 02:10:39,486 DIFFERENT THING AND OTHER 2931 02:10:39,486 --> 02:10:41,988 THOUGHT OF GOING PUBLIC, IF YOU 2932 02:10:41,988 --> 02:10:44,057 WILL, IS MAYBE NOT REALLY FOR 2933 02:10:44,057 --> 02:10:47,694 NOW BUT THINKING AHEAD ABOUT THE 2934 02:10:47,694 --> 02:10:50,130 CAMPAIGNS SUCH AS FOR STROKE AS 2935 02:10:50,130 --> 02:10:52,966 A BRAIN HEART ATTACK AND SO 2936 02:10:52,966 --> 02:10:53,166 FORTH. 2937 02:10:53,166 --> 02:10:56,102 MORE BROAD PUBLIC AWARENESS AT 2938 02:10:56,102 --> 02:10:57,303 LEAST ONCE YOU GOT THINGS WELL 2939 02:10:57,303 --> 02:10:58,671 ENOUGH DEFINED SAYING THIS IS 2940 02:10:58,671 --> 02:11:03,076 WHAT WE'RE TALKING ABOUT. 2941 02:11:03,076 --> 02:11:05,879 BRINGING IN THE INPUT. 2942 02:11:05,879 --> 02:11:16,289 >> JOHN AND THEN KAREN. 2943 02:11:28,968 --> 02:11:31,371 IF THE CHILDREN ON OUR SYSTEM 2944 02:11:31,371 --> 02:11:36,075 HAVEN'T BEEN SEEN BY A 2945 02:11:36,075 --> 02:11:36,810 REHABILITATION OR WHATEVER AND 2946 02:11:36,810 --> 02:11:39,913 WE MONITOR HOW QUICKLY IT TAKES 2947 02:11:39,913 --> 02:11:41,915 THE TEAMER TO SEE THE CHILD WITH 2948 02:11:41,915 --> 02:11:43,817 CVI AND HAVE TWO WEEKS. 2949 02:11:43,817 --> 02:11:47,353 SO WE REFER FROM THE REGISTER TO 2950 02:11:47,353 --> 02:11:48,688 THE EDUCATION SERVICE OUR 2951 02:11:48,688 --> 02:11:49,756 STANDARD IS THAT CHILD MUST BE 2952 02:11:49,756 --> 02:11:51,057 SEEN WITHIN TWO WEEKS. 2953 02:11:51,057 --> 02:11:54,894 WE MONITORED THE STANDARDS. 2954 02:11:54,894 --> 02:11:57,197 WE HAVE A WHOLE RANGE OF 2955 02:11:57,197 --> 02:11:59,199 STANDARD BASED ON THE REGISTER 2956 02:11:59,199 --> 02:12:01,601 WE PUBLISHED AND KPI IS ON THAT. 2957 02:12:01,601 --> 02:12:06,339 THAT'S A REALLY USEFUL TOOL TO 2958 02:12:06,339 --> 02:12:06,539 HAVE. 2959 02:12:06,539 --> 02:12:08,641 I DON'T SEE THAT HERE TO BE 2960 02:12:08,641 --> 02:12:09,142 HONEST. 2961 02:12:09,142 --> 02:12:12,078 I DON'T THINK IT'S NIH'S ROLE 2962 02:12:12,078 --> 02:12:12,946 BUT MAYBE IT IS. 2963 02:12:12,946 --> 02:12:18,318 AS AN OBSERVER OF IT, THOSE 2964 02:12:18,318 --> 02:12:20,353 STANDARDS AND MAPPING THEM ON TO 2965 02:12:20,353 --> 02:12:21,387 HOW MANY CHILDREN HAVE BEEN 2966 02:12:21,387 --> 02:12:23,990 NOTIFIED AND SEEN INTO THE 2967 02:12:23,990 --> 02:12:24,824 EDUCATIONAL SYSTEM AND 2968 02:12:24,824 --> 02:12:25,391 REHABILITATION SERVICES IS 2969 02:12:25,391 --> 02:12:31,998 REALLY KEY. 2970 02:12:31,998 --> 02:12:33,466 THAT'S A KEY FEATURE OF THE 2971 02:12:33,466 --> 02:12:34,801 SCOTTISH SYSTEM BUT I DON'T SEE 2972 02:12:34,801 --> 02:12:45,311 THAT AND MAY BE A ROLE THING. 2973 02:12:46,079 --> 02:12:48,481 >> I'M FROM CINCINNATI. 2974 02:12:48,481 --> 02:12:51,351 FROM MY OT PERSPECTIVE THINKING 2975 02:12:51,351 --> 02:12:56,523 ABOUT FUNCTIONAL PERFORMANCE ADD 2976 02:12:56,523 --> 02:12:57,490 MEASURING HOW MUCH HELP A CHILD 2977 02:12:57,490 --> 02:12:59,058 NEEDS AND ARE THEY DOING WHAT 2978 02:12:59,058 --> 02:12:59,993 THEY LOVE AND PLAYING SPORTS OR 2979 02:12:59,993 --> 02:13:03,563 DRAWING A PICTURE FOR THEIR 2980 02:13:03,563 --> 02:13:04,531 PARENTS. 2981 02:13:04,531 --> 02:13:05,965 THINKING ABOUT THE CHILD'S GOALS 2982 02:13:05,965 --> 02:13:08,668 AND PARENT'S GOALS AND I MESSED 2983 02:13:08,668 --> 02:13:10,270 THE BOAT ON THE LAST QUESTION 2984 02:13:10,270 --> 02:13:12,639 BUT MAKING SURE WE HAVE SOME 2985 02:13:12,639 --> 02:13:14,140 INDIVIDUALIZED STANDARDIZED 2986 02:13:14,140 --> 02:13:24,617 METRIC TO MEASURE FUNCTION. 2987 02:13:25,518 --> 02:13:27,086 >> I'M FROM PERKINS SCHOOL FOR 2988 02:13:27,086 --> 02:13:29,622 THE BLIND AND THE NEXT QUESTION 2989 02:13:29,622 --> 02:13:31,791 IS ABOUT DIFFERENT DATA BEING 2990 02:13:31,791 --> 02:13:32,926 COLLECTED AND QUESTIONS COMING 2991 02:13:32,926 --> 02:13:34,193 FROM IT. 2992 02:13:34,193 --> 02:13:38,731 COMING AT CVI FROM BEING A LOW 2993 02:13:38,731 --> 02:13:40,466 VISION OPTOMETRIST I THINK WHILE 2994 02:13:40,466 --> 02:13:42,602 IT'S IMPORTANT TO STANDARDIZE 2995 02:13:42,602 --> 02:13:49,809 OUR DATA THERE'S VALUE IN ALSO 2996 02:13:49,809 --> 02:13:51,911 REPORTING THE PARTICULARLY THE 2997 02:13:51,911 --> 02:13:53,479 VISION ASSESSMENTS BECAUSE WE 2998 02:13:53,479 --> 02:13:54,647 HAVE A VERY HETEROGENOUS 2999 02:13:54,647 --> 02:13:56,482 POPULATION AND HAVE TO ADAPT OUR 3000 02:13:56,482 --> 02:13:57,650 TESTING STRATEGIES TO THE 3001 02:13:57,650 --> 02:13:59,619 PATIENT AND SOMETHING WOULD BE 3002 02:13:59,619 --> 02:14:01,154 LOST IF WE DIDN'T CAPTURE WHAT 3003 02:14:01,154 --> 02:14:01,988 NEEDED TO BE DONE TO COLLECT THE 3004 02:14:01,988 --> 02:14:07,126 DATA FOR THAT CHILD. 3005 02:14:07,126 --> 02:14:08,962 I ALSO THINK FROM A QUALITY OF 3006 02:14:08,962 --> 02:14:10,663 LIFE QUESTIONNAIRE, I THINK WE 3007 02:14:10,663 --> 02:14:12,065 CAN LEARN A LOT FROM THE LOW 3008 02:14:12,065 --> 02:14:16,936 VISION FIELD IN TERMS OF MAKING 3009 02:14:16,936 --> 02:14:20,106 THOSE QUESTIONNAIRES ADAPTIVE 3010 02:14:20,106 --> 02:14:21,207 AND TRAP WHAT'S IMPORTANT NOT 3011 02:14:21,207 --> 02:14:25,678 ONLY WHAT CAN YOU DO AND YOUR 3012 02:14:25,678 --> 02:14:28,381 VISIBLE ABILITY AND TRACK IF THE 3013 02:14:28,381 --> 02:14:32,051 INTERVENTIONS ARE IMPROVING THE 3014 02:14:32,051 --> 02:14:32,685 THINGS IMPORTANT TO THE PATIENT 3015 02:14:32,685 --> 02:14:42,895 AND FAMILY. 3016 02:14:43,429 --> 02:14:47,867 >> I WOULD LIKE TO LOBBY FOR AN 3017 02:14:47,867 --> 02:14:58,044 ET -- ETIOLOGY OR CAUSE AND 3018 02:14:58,044 --> 02:15:03,149 WHEN WE SEE AND THAT MAY TIE 3019 02:15:03,149 --> 02:15:05,385 INTO THE DISASSOCIATION OF 3020 02:15:05,385 --> 02:15:05,652 RADIOLOGY. 3021 02:15:05,652 --> 02:15:06,986 I WANTED TO SAY I THINK IT'S 3022 02:15:06,986 --> 02:15:08,121 IMPORTANT AND MAKE AN EFFORT TO 3023 02:15:08,121 --> 02:15:16,029 TRY TO CAPTURE THAT DATA. 3024 02:15:16,029 --> 02:15:17,296 >> FOR THE WHOLE ROOM, DON'T 3025 02:15:17,296 --> 02:15:22,435 ASSUME WE KNOW ANYTHING. 3026 02:15:22,435 --> 02:15:26,673 I APPRECIATE OBVIOUS -- STATE 3027 02:15:26,673 --> 02:15:27,674 THE OBVIOUS BECAUSE WE'RE JUST 3028 02:15:27,674 --> 02:15:32,111 LEARNING ABOUT THIS OURSELVES. 3029 02:15:32,111 --> 02:15:35,181 >> I'M FROM THE CEREBRAL PALSY 3030 02:15:35,181 --> 02:15:36,949 NETWORK AND SET UP A TAXONOMY 3031 02:15:36,949 --> 02:15:38,718 AND WHAT IS REQUIRED FOR A CORE 3032 02:15:38,718 --> 02:15:40,053 DATA ELEMENTS AND OTHER THINGS 3033 02:15:40,053 --> 02:15:41,454 THAT ARE OPTIONAL SO YOU CAN 3034 02:15:41,454 --> 02:15:43,723 KEEP IT THE MOST CLINICAL AS 3035 02:15:43,723 --> 02:15:44,123 POSSIBLE. 3036 02:15:44,123 --> 02:15:45,792 BECAUSE IF YOU GET TOO DIFFERENT 3037 02:15:45,792 --> 02:15:47,393 FROM BEING CLINICAL YOU'RE GOING 3038 02:15:47,393 --> 02:15:49,729 TO LOSE PEOPLE IN THEIR 3039 02:15:49,729 --> 02:15:50,430 CONSISTENCY OF DATA COLLECTION 3040 02:15:50,430 --> 02:15:52,365 SO THE MORE YOU CAN INTEGRATE IT 3041 02:15:52,365 --> 02:15:56,636 INTO THE CLINIC, KEEP IT 3042 02:15:56,636 --> 02:15:58,271 EFFICIENT WITH THE FLOW IT WILL 3043 02:15:58,271 --> 02:15:59,105 REALLY HELP. 3044 02:15:59,105 --> 02:16:02,141 AND THEN SECOND THING IS JUST TO 3045 02:16:02,141 --> 02:16:04,677 CONSIDER THE CLINICAL DATABASE 3046 02:16:04,677 --> 02:16:06,045 AND THE COMMUNITY OR THE 3047 02:16:06,045 --> 02:16:07,780 EXPERIENCE TO INCLUDE EITHER 3048 02:16:07,780 --> 02:16:10,116 BOTH OF THEM IN ONE OR HAVE THEM 3049 02:16:10,116 --> 02:16:18,257 BE ABLE TO TALK TO EACH OTHER. 3050 02:16:18,257 --> 02:16:19,759 >> VERY GOOD. 3051 02:16:19,759 --> 02:16:20,860 THE SYSTEMS WE'RE USING THE 3052 02:16:20,860 --> 02:16:23,696 FORUMS ALLOW US TO CREATE CORE 3053 02:16:23,696 --> 02:16:24,864 ELEMENTS AND SUPPLEMENTAL ONES 3054 02:16:24,864 --> 02:16:30,369 TO MAKE REQUIREMENTS AND IT HAS 3055 02:16:30,369 --> 02:16:37,276 THOSE TOP GAP THINGS AND IT'S 3056 02:16:37,276 --> 02:16:40,446 NICE FOR DATA MANAGERS. 3057 02:16:40,446 --> 02:16:47,386 START SMALL. 3058 02:16:47,386 --> 02:16:49,355 WE NEED TO RECOGNIZE THIS TAKES 3059 02:16:49,355 --> 02:16:52,391 PEOPLE TIME TO DO AND TRACKING 3060 02:16:52,391 --> 02:16:53,626 THAT OUT AND BEING AS -- LIKE 3061 02:16:53,626 --> 02:16:55,928 THESE ARE THE CORE THINGS AND I 3062 02:16:55,928 --> 02:16:58,097 LIKE FIVE QUESTIONS. 3063 02:16:58,097 --> 02:17:00,800 LET'S NOT HAVE 25 QUESTIONS. 3064 02:17:00,800 --> 02:17:02,268 LET'S START WITH FIVE AND GO FOR 3065 02:17:02,268 --> 02:17:03,202 ANOTHER FIVE LATER BECAUSE WE 3066 02:17:03,202 --> 02:17:03,936 NEED TO VALUE PEOPLE'S TIME AND 3067 02:17:03,936 --> 02:17:12,011 ENERGY. 3068 02:17:12,011 --> 02:17:17,116 WE'LL HAVE DIFFERENT FORMS BASED 3069 02:17:17,116 --> 02:17:22,488 ON DIFFERENT USERS AND BASED ON 3070 02:17:22,488 --> 02:17:29,529 THE CONTENT AND COMBINE THEM THE 3071 02:17:29,529 --> 02:17:30,296 PROVIDER ENTERED INFORMATION 3072 02:17:30,296 --> 02:17:31,564 VERSUS THE LIVED EXPERIENCE AND 3073 02:17:31,564 --> 02:17:34,066 THAT KIND OF THINK BUT THANK 3074 02:17:34,066 --> 02:17:34,267 YOU. 3075 02:17:34,267 --> 02:17:35,268 IT'S GOOD TO HEAR WE'RE ON THE 3076 02:17:35,268 --> 02:17:44,110 RIGHT TRACK. 3077 02:17:44,110 --> 02:17:47,980 >> I HAVE A QUESTION FOR JOHN 3078 02:17:47,980 --> 02:17:49,715 AND A COMMENT. 3079 02:17:49,715 --> 02:17:51,584 I'M CURIOUS, SOMEONE BROUGHT UP 3080 02:17:51,584 --> 02:17:52,318 OUTCOMES. 3081 02:17:52,318 --> 02:17:56,055 I'M WONDERING IF YOU'RE TRACKING 3082 02:17:56,055 --> 02:17:58,124 OUTCOMES AT ALL IN YOUR TOOL IN 3083 02:17:58,124 --> 02:18:01,594 SCOTLAND AND SECONDLY IF WE'RE 3084 02:18:01,594 --> 02:18:02,995 THINKING ABOUT QUALITY OF LIFE, 3085 02:18:02,995 --> 02:18:04,964 EDUCATIONAL OUTCOMES, ETCETERA, 3086 02:18:04,964 --> 02:18:07,500 I'M WONDERING IF THERE'S THE 3087 02:18:07,500 --> 02:18:10,837 OPPORTUNITY TO PARTNER WITH THE 3088 02:18:10,837 --> 02:18:15,808 DEPARTMENT OF SPECIAL EDUCATION 3089 02:18:15,808 --> 02:18:20,146 OFFICE AND FIGURE OUT WAYS AND 3090 02:18:20,146 --> 02:18:22,114 THERE'S PROBABLY LESSONS WE CAN 3091 02:18:22,114 --> 02:18:23,883 LEARN FROM THAT AND GET 3092 02:18:23,883 --> 02:18:25,451 INTEGRATE AND GET BETTER 3093 02:18:25,451 --> 02:18:25,885 INFORMATION SOONER. 3094 02:18:25,885 --> 02:18:35,962 THANK YOU. 3095 02:18:35,962 --> 02:18:41,267 WE'RE NOT TRACKING THE 3096 02:18:41,267 --> 02:18:43,169 EDUCATIONAL OUTCOMES BUT WE WITH 3097 02:18:43,169 --> 02:18:44,637 DOUGH HAVE THE CAPABILITY 3098 02:18:44,637 --> 02:18:47,240 BECAUSE EVERY CHILD ON THE SET 3099 02:18:47,240 --> 02:18:50,176 HAS ITS UNIQUE CODE AND THAT'S 3100 02:18:50,176 --> 02:18:51,077 ACROSS EDUCATION FROM HEALTH AND 3101 02:18:51,077 --> 02:18:51,944 SOCIAL WORK. 3102 02:18:51,944 --> 02:18:53,946 WE'RE ABLE TO COMBINE THOSE DATA 3103 02:18:53,946 --> 02:18:57,083 SETS FROM THE SCOTTISH 3104 02:18:57,083 --> 02:18:57,383 GOVERNMENT. 3105 02:18:57,383 --> 02:19:01,053 SO WE ARE ABLE TO CORRELATE THE 3106 02:19:01,053 --> 02:19:02,955 CHILDREN WITH THE EDUCATION 3107 02:19:02,955 --> 02:19:05,324 OUTCOME BUT DON'T SPECIFICALLY 3108 02:19:05,324 --> 02:19:06,292 ON OUR REGISTER TRACK THOSE AT 3109 02:19:06,292 --> 02:19:10,263 ALL. 3110 02:19:10,263 --> 02:19:11,530 I'D LIKE TO BUT THERE'S A LIMIT 3111 02:19:11,530 --> 02:19:13,833 ON WHAT I CAN PUSH. 3112 02:19:13,833 --> 02:19:15,735 >> I'LL POSE THAT BACK TO YOU. 3113 02:19:15,735 --> 02:19:17,303 DO YOU HAVE EXPERIENCE WITH WHAT 3114 02:19:17,303 --> 02:19:19,605 YOU WORKED ON OR SOMETHING 3115 02:19:19,605 --> 02:19:20,339 SIMILAR AND BROUGHT IN 3116 02:19:20,339 --> 02:19:21,374 EDUCATIONAL INFORMATION? 3117 02:19:21,374 --> 02:19:23,743 >> I DID HEAR THIS MESSAGE IN 3118 02:19:23,743 --> 02:19:25,478 PITTSBURGH THE DEPARTMENT OF 3119 02:19:25,478 --> 02:19:26,812 EDUCATION AND SOMEONE ADVOCATED 3120 02:19:26,812 --> 02:19:27,546 FOR INCLUDING THEM IN THE 3121 02:19:27,546 --> 02:19:36,122 PROJECT AND I HAPPEN TO RUN INTO 3122 02:19:36,122 --> 02:19:38,291 SOMEONE AND SENT THEM THE LINK 3123 02:19:38,291 --> 02:19:40,092 TO THE WORKSHOP TO SHARE WITH 3124 02:19:40,092 --> 02:19:42,261 THEIR EDUCATORS BUT I ANTICIPATE 3125 02:19:42,261 --> 02:19:44,130 FOLLOWING UP. 3126 02:19:44,130 --> 02:19:46,299 I CAN'T MAKE PROMISES AT THIS 3127 02:19:46,299 --> 02:19:48,467 POINT BUT IT'S AN AREA OF 3128 02:19:48,467 --> 02:19:52,138 INTEREST TO US AND HOPEFULLY WE 3129 02:19:52,138 --> 02:19:54,006 CAN MAKE THE CONNECTION. 3130 02:19:54,006 --> 02:19:56,909 >> MIKE KAVANAUGH OF RODCHESTER. 3131 02:19:56,909 --> 02:20:06,285 I WANTED TO ADVOCATE FOR VISUAL 3132 02:20:06,285 --> 02:20:09,488 PEREMETRY AND IT HAS A 3133 02:20:09,488 --> 02:20:10,790 VARIABILITY IN THE TYPES OF 3134 02:20:10,790 --> 02:20:12,258 TESTS YOU CAN PERFORM AND NONE 3135 02:20:12,258 --> 02:20:14,293 ARE IDEAL FOR THE PATIENT 3136 02:20:14,293 --> 02:20:17,697 POPULATION EITHER SO FUTURE 3137 02:20:17,697 --> 02:20:19,165 DEVELOPMENT OF BETTER DIAGNOSTIC 3138 02:20:19,165 --> 02:20:21,200 GAPS SPECIFIC FOR THIS CONDITION 3139 02:20:21,200 --> 02:20:22,301 WILL ALSO BE POTENTIAL OUTCOME 3140 02:20:22,301 --> 02:20:32,611 FROM THE REGISTRY. 3141 02:20:35,982 --> 02:20:38,184 >> THE INCLUSION OF DATA ACROSS 3142 02:20:38,184 --> 02:20:40,586 THE LIFE SPAN AND THE TRANSITION 3143 02:20:40,586 --> 02:20:41,754 TO ADULTHOOD AND NOT JUST THE 3144 02:20:41,754 --> 02:20:45,691 PERIOD BUT EXTENDING INTO 3145 02:20:45,691 --> 02:20:47,393 ADULTHOOD TO BETTER UNDERSTAND 3146 02:20:47,393 --> 02:20:50,896 HOW THE MANIFESTATIONS CHANGE 3147 02:20:50,896 --> 02:20:51,964 AND THEIR CAREGIVERS. 3148 02:20:51,964 --> 02:20:54,667 AND HOW THAT IMPACTS AND QUALITY 3149 02:20:54,667 --> 02:20:56,502 OF LIFE QUESTIONNAIRE NOT JUST 3150 02:20:56,502 --> 02:21:01,907 FOR THE INDIVIDUAL BUT THEIR 3151 02:21:01,907 --> 02:21:06,445 FAMILY MEMBERS AS WELL AND 3152 02:21:06,445 --> 02:21:16,889 IMAGING FOR THE SCREENING. 3153 02:21:17,623 --> 02:21:19,692 >> I WAS HAPPY IT HEAR THE 3154 02:21:19,692 --> 02:21:21,394 DATABASE WAS GOING TO HAVE LIVED 3155 02:21:21,394 --> 02:21:21,927 EXPERIENCES FROM PEOPLE. 3156 02:21:21,927 --> 02:21:26,132 WHEN WE STARTED WORKING WITH 3157 02:21:26,132 --> 02:21:29,702 CVI, WE HAD TO INFER WHAT THE 3158 02:21:29,702 --> 02:21:30,736 EXPERIENCES WERE WITH THE 3159 02:21:30,736 --> 02:21:31,804 CHILDREN WITH CVI BECAUSE THEY 3160 02:21:31,804 --> 02:21:33,172 COULDN'T TALK. 3161 02:21:33,172 --> 02:21:34,273 THEY COULDN'T WALK. 3162 02:21:34,273 --> 02:21:36,976 THEY COULDN'T TELL US AND WE'RE 3163 02:21:36,976 --> 02:21:39,045 LEARNING SO MUCH MORE NOW AND 3164 02:21:39,045 --> 02:21:40,513 EXPANDING AND THE DEFINITION IS 3165 02:21:40,513 --> 02:21:48,754 EXPANDING BECAUSE OF THAT. 3166 02:21:48,754 --> 02:21:50,790 MY CONCERN IS THE DATABASE IS 3167 02:21:50,790 --> 02:21:52,391 RUNNING FROM A DEFICIT MODEL 3168 02:21:52,391 --> 02:21:53,726 SAYING WHAT PEOPLE DON'T HAVE 3169 02:21:53,726 --> 02:21:55,194 RATHER THAN WHAT THEY DO HAVE. 3170 02:21:55,194 --> 02:21:56,395 THEY DON'T HAVE THIS -- THEY 3171 02:21:56,395 --> 02:21:57,029 DON'T HAVE THAT. 3172 02:21:57,029 --> 02:22:02,268 THEY DON'T HAVE THAT. 3173 02:22:02,268 --> 02:22:03,903 THE PROBLEM IS WHEN YOU DO 3174 02:22:03,903 --> 02:22:04,837 INTERVENTIONS YOU HAVE TO LOOK 3175 02:22:04,837 --> 02:22:06,439 AT THE STRENGTHS AND WEAKNESSES 3176 02:22:06,439 --> 02:22:10,109 BECAUSE IF YOU JUST LOOK AT THE 3177 02:22:10,109 --> 02:22:12,111 WEAKNESSES YOU CAN TOTALLY MISS 3178 02:22:12,111 --> 02:22:14,580 THE APPROPRIATE INTERVENTIONS 3179 02:22:14,580 --> 02:22:15,915 FOR THE PERSON. 3180 02:22:15,915 --> 02:22:18,717 WHAT WORKS FOR ONE PERSON CAN 3181 02:22:18,717 --> 02:22:22,288 TURN SOMEBODY TOTALLY OFF. 3182 02:22:22,288 --> 02:22:25,758 THERE HAS TO BE SOME WAY OF 3183 02:22:25,758 --> 02:22:28,194 COLLECTING DATA FOR INVENTIONS 3184 02:22:28,194 --> 02:22:30,262 AND MATCHING IT AND LOOKING AT 3185 02:22:30,262 --> 02:22:33,299 THE CHILDREN'S STRENGTHS BECAUSE 3186 02:22:33,299 --> 02:22:35,267 OTHERWISE THEY'LL BE COOKIE 3187 02:22:35,267 --> 02:22:37,236 CUTTER APPROACHES AND I CAN'T 3188 02:22:37,236 --> 02:22:38,170 TELL YOU HOW MUCH TIMES I'VE 3189 02:22:38,170 --> 02:22:40,372 READ ALL THE MEDICAL DATA POINTS 3190 02:22:40,372 --> 02:22:43,008 AND GONE INTO LOOK AT CHILDREN 3191 02:22:43,008 --> 02:22:44,977 AND FOUND THEM TO BE COMPLETELY 3192 02:22:44,977 --> 02:22:48,614 DIFFERENT FROM WHAT I ENVISIONED 3193 02:22:48,614 --> 02:22:51,317 IN MY MIND AND WOULD HAVE DONE 3194 02:22:51,317 --> 02:22:53,552 SOMETHING COMPLETELY WRONG FOR 3195 02:22:53,552 --> 02:22:55,621 THEM AND NOT HELP THEM. 3196 02:22:55,621 --> 02:22:58,023 SO THAT WOULD BE MY CONCERN AND 3197 02:22:58,023 --> 02:23:01,494 THE OTHER IS TO BE CAREFUL ABOUT 3198 02:23:01,494 --> 02:23:03,863 USING THE TERMS NEURO TYPICAL 3199 02:23:03,863 --> 02:23:05,397 AND NEURAL ATYPICAL. 3200 02:23:05,397 --> 02:23:09,368 I LIKED IT WHEN THEY TALKED 3201 02:23:09,368 --> 02:23:10,836 ABOUT NEURODIVERSITY. 3202 02:23:10,836 --> 02:23:12,438 THERE'S NOT AN EITHER/OR. 3203 02:23:12,438 --> 02:23:15,975 IT'S A WHOLE RANGE OF PEOPLE. 3204 02:23:15,975 --> 02:23:20,112 THERE WOULD BE A WHOLE RANGE OF 3205 02:23:20,112 --> 02:23:21,847 NEURODIVERSITY IN THIS ROOM I 3206 02:23:21,847 --> 02:23:23,816 MEAN, WHO IS NORMAL, REALLY. 3207 02:23:23,816 --> 02:23:26,118 WE HAVE TO BE CAREFUL ABOUT THAT 3208 02:23:26,118 --> 02:23:28,087 BECAUSE IT'S GOING TO TYPE 3209 02:23:28,087 --> 02:23:30,689 PEOPLE AND TYPE PEOPLE LIKE 3210 02:23:30,689 --> 02:23:32,258 SEBASTIAN AND LIKE THE CHILDREN 3211 02:23:32,258 --> 02:23:33,425 THAT RACHEL WORKED WITH AND IT'S 3212 02:23:33,425 --> 02:23:38,297 GOING TO PUSH THEM OUT. 3213 02:23:38,297 --> 02:23:40,199 WE NEED TO INCLUDE THEM. 3214 02:23:40,199 --> 02:23:41,033 THANK YOU. 3215 02:23:41,033 --> 02:23:41,667 >> THANK YOU. 3216 02:23:41,667 --> 02:23:45,738 I'LL LEAVE THE LAST WORD WITH 3217 02:23:45,738 --> 02:23:47,339 KERRY AND ERIKA. 3218 02:23:47,339 --> 02:23:48,107 >> ALL RIGHT. 3219 02:23:48,107 --> 02:23:50,342 I JUST WANTED TO SAY THANK YOU 3220 02:23:50,342 --> 02:23:53,445 SO MUCH EVERYONE FOR YOUR 3221 02:23:53,445 --> 02:23:56,382 ATTENTION AND FOR YOUR 3222 02:23:56,382 --> 02:23:57,850 PARTICIPATION IN THIS DISCUSSION 3223 02:23:57,850 --> 02:24:00,085 AND SHARING YOUR IDEAS. 3224 02:24:00,085 --> 02:24:01,453 PLEASE CONNECT WITH ME IF YOU 3225 02:24:01,453 --> 02:24:05,057 WANT TO TALK ABOUT THE REGISTRY 3226 02:24:05,057 --> 02:24:05,291 FURTHER. 3227 02:24:05,291 --> 02:24:09,361 MY E-MAIL IS ERIKA.NELSON AT 3228 02:24:09,361 --> 02:24:14,133 NIH.gov AND IT'S ERIKA WITH A 3229 02:24:14,133 --> 02:24:14,667 "K". 3230 02:24:14,667 --> 02:24:17,970 AND I INCLUDED OUR NEI CVI 3231 02:24:17,970 --> 02:24:18,504 MAILBOX ON THERE AS WELL. 3232 02:24:18,504 --> 02:24:24,810 THANK YOU SO MUCH. 3233 02:24:24,810 --> 02:24:26,946 TWO MINUTES AFTER THE TOP OF 3234 02:24:26,946 --> 02:24:28,280 THE HOUR. 3235 02:24:28,280 --> 02:24:29,582 LUNCH IS HERE AND WE'RE ON LUNCH 3236 02:24:29,582 --> 02:24:33,886 BREAK NOW AND RECONVENE AT 3237 02:24:33,886 --> 02:24:36,555 12:40 -- IS THERE A CHANGE? 3238 02:24:36,555 --> 02:24:36,855 GROUP PHOTO. 3239 02:24:36,855 --> 02:24:36,922 3240 02:24:40,459 --> 02:24:42,261 WHILE PEOPLE ARE HUNGRY, GREAT 3241 02:24:42,261 --> 02:24:43,862 IDEA IF WE CAN CONVENE AT THE 3242 02:24:43,862 --> 02:24:45,698 FRONT AND GET A SLIDE AND TAKE A 3243 02:24:45,698 --> 02:24:46,599 GROUP PHOTO. 3244 02:24:46,599 --> 02:24:47,633 PLEASE JOIN US FOR THAT BEFORE 3245 02:24:47,633 --> 02:24:50,135 YOU GRAB YOUR LUNCH. 3246 02:24:50,135 --> 02:24:53,385 THANK YOU. 3247 02:25:17,668 --> 02:25:20,103 ALSO AN INDICATION THIS IS 3248 02:25:20,103 --> 02:25:29,513 PRETTY TYPICAL WE GET KIDS FROM 3249 02:25:29,513 --> 02:25:30,580 DEPRIVED HOUSEHOLDS AND 3250 02:25:30,580 --> 02:25:32,649 COMMUNITIES LIKE EVERYBODY ELSE. 3251 02:25:32,649 --> 02:25:36,987 WE HAD POOR FIXATION WITH EITHER 3252 02:25:36,987 --> 02:25:39,556 EYE WE COULD NOT ELIST IT 3253 02:25:39,556 --> 02:25:44,761 FIXATION PREFERENCE AND HAD FULL 3254 02:25:44,761 --> 02:25:55,305 EYE MOVEMENTS AN AND HAS HE HAD 3255 02:26:01,578 --> 02:26:05,615 A LOW REFLECTIVE AREA. 3256 02:26:05,615 --> 02:26:11,621 HIS OPTIC NERVES LOOKED PALE AND 3257 02:26:11,621 --> 02:26:22,099 TYPICALLY WHAT WE SEE WITH 3258 02:26:26,136 --> 02:26:31,708 TEMPORAL POWER AND WE SEE 3259 02:26:31,708 --> 02:26:34,845 LOW-FUNCTIONING CVI HERE. 3260 02:26:34,845 --> 02:26:37,380 THEY HAVE TO MAKE THEY CAN MOVE 3261 02:26:37,380 --> 02:26:39,349 THEIR EYES BECAUSE WE ASSESS 3262 02:26:39,349 --> 02:26:41,284 BABIES BASED ON THEIR EYE 3263 02:26:41,284 --> 02:26:41,551 MOVEMENT. 3264 02:26:41,551 --> 02:26:44,287 DO THEY FOLLOW AN OBJECT OR 3265 02:26:44,287 --> 02:26:45,589 REDIRECT THEIR GAZE TOWARDS 3266 02:26:45,589 --> 02:26:47,624 SOMETHING AND REQUIRES IT BE 3267 02:26:47,624 --> 02:26:57,300 INTACT. 3268 02:26:57,300 --> 02:27:02,572 WE HAVE TO ASSESS AN EYE-VISION 3269 02:27:02,572 --> 02:27:05,375 PROBLEM AND NORMAL RESPONSES TO 3270 02:27:05,375 --> 02:27:10,614 LIGHT AND IB GENERAL THEY HAVE 3271 02:27:10,614 --> 02:27:16,386 TO HAVE NISTAGMUS AND THE HAVE 3272 02:27:16,386 --> 02:27:26,930 OPTIC ATROPHY WE ASSESS VISUAL 3273 02:27:43,346 --> 02:27:49,553 WE BEHAVIORAL TO NORMAL VISUAL 3274 02:27:49,553 --> 02:27:51,288 BEHAVIOR FOR AN INFANT WHICH IS 3275 02:27:51,288 --> 02:27:53,557 RELIABLE FIXATION IN PURSUIT OF 3276 02:27:53,557 --> 02:27:57,694 A ONE-INCH TOY AT TWO FEET OR 3277 02:27:57,694 --> 02:28:05,235 ACUITY BETTER AT 20/50. 3278 02:28:05,235 --> 02:28:11,508 YOU CAN SEE THE RANGE AND THIS 3279 02:28:11,508 --> 02:28:14,845 CHILD WOULD BE CLASSIFIED AS A 3280 02:28:14,845 --> 02:28:16,880 TYPE 2 AND FIXATE ON LARGE 3281 02:28:16,880 --> 02:28:22,619 OBJECTS AND THAT'S ABOUT IT. 3282 02:28:22,619 --> 02:28:33,063 HIS VISION IS POOR SO HE 3283 02:28:34,831 --> 02:28:37,300 QUALIFIES ON THAT BASIS AND NOT 3284 02:28:37,300 --> 02:28:40,871 USING HIS VISION TO INTERACT 3285 02:28:40,871 --> 02:28:42,305 WITH THE ENVIRONMENT AND WOULD 3286 02:28:42,305 --> 02:28:43,907 BE LOW PHASE 1 AND FROM THAT 3287 02:28:43,907 --> 02:28:46,209 POINT OF VIEW HE QUALIFIES. 3288 02:28:46,209 --> 02:28:47,611 AND THIS CHILD HAD NUMEROUS 3289 02:28:47,611 --> 02:28:57,854 COMORBIDITIES. 3290 02:28:59,689 --> 02:29:00,090 OPT 3291 02:29:00,090 --> 02:29:03,426 OPTIC ATROPHY AND NYSTAGMUS AND 3292 02:29:03,426 --> 02:29:08,665 HOW REFLECTIVE ERROR. 3293 02:29:08,665 --> 02:29:19,209 OUR MANAGEMENT STRATEGY WAS IN 3294 02:29:24,447 --> 02:29:27,918 ESOTROPIA AND WE DO NOT GIVE A 3295 02:29:27,918 --> 02:29:30,720 LOW REFRACTIVE TREATMENT WITH 3296 02:29:30,720 --> 02:29:32,389 SOMEONE THIS BAD OF VISION AND 3297 02:29:32,389 --> 02:29:42,699 HE DIDN'T GET IT. 3298 02:29:46,236 --> 02:29:47,837 OVER THE NEXT YEAR HE IMPROVED 3299 02:29:47,837 --> 02:29:56,880 AND THAT PUT HIM AT A LEVEL 4 ON 3300 02:29:56,880 --> 02:29:57,781 THE VISUAL BEHAVIOR SCALE AND 3301 02:29:57,781 --> 02:30:03,386 HAD A PREFERENCE FOR THE LEFT 3302 02:30:03,386 --> 02:30:13,830 EYE AND DIAGNOSED HIM OF 3303 02:30:16,666 --> 02:30:27,143 STABISMIC AMBLYOPIA AND AND THE 3304 02:30:35,685 --> 02:30:38,321 FACTORS ASSOCIATED WITH POOR 3305 02:30:38,321 --> 02:30:41,257 IMPROVEMENT THAT WAS DONE 3306 02:30:41,257 --> 02:30:43,293 INCLUDES OLDER AGE AT 3307 02:30:43,293 --> 02:30:53,570 PRESENTATION SEIZURES THAT WERE 3308 02:30:53,570 --> 02:30:57,674 HARD TO CONTROL, CEREBRAL PALSY 3309 02:30:57,674 --> 02:31:00,377 AND OPTIC ATROPHY WE SEE IN THIS 3310 02:31:00,377 --> 02:31:03,046 CASE, NONETHELESS, IN SPITE OF 3311 02:31:03,046 --> 02:31:07,550 HAVING MANY OF THESE THINGS, 3312 02:31:07,550 --> 02:31:09,686 THIS CHILD HAD IMPROVEMENT IN 3313 02:31:09,686 --> 02:31:17,060 HIS VISION. 3314 02:31:17,060 --> 02:31:21,698 WE STARTED PATCHING HIS LEFT EYE 3315 02:31:21,698 --> 02:31:27,937 IN GOOD COMPLIANCE WITH HIS 3316 02:31:27,937 --> 02:31:38,481 FOSTER MOTHER AND HIS STABISMUS 3317 02:31:45,755 --> 02:31:53,930 WAS THE SAME FINDING AND WHAT 3318 02:31:53,930 --> 02:31:57,367 WOULD BE THE FINDING FOR 3319 02:31:57,367 --> 02:31:58,501 STRABISMUS SURGERY AND TAKE A 3320 02:31:58,501 --> 02:31:59,436 COHORT OF 70 CHILDREN FOLLOWED 3321 02:31:59,436 --> 02:32:03,473 FOR A LONG PERIOD OF TIME ALL OF 3322 02:32:03,473 --> 02:32:13,550 WHOM HAD CVI AND STRABISMUS, AND 3323 02:32:13,550 --> 02:32:17,620 TURNED OUT INTERESTINGLY ENOUGH 3324 02:32:17,620 --> 02:32:24,894 RESOLUTION OF THE STRABISMUS 3325 02:32:24,894 --> 02:32:31,267 OCCURRED IN 16% AND STRABISMUS 3326 02:32:31,267 --> 02:32:41,811 AND THE REMAINDER OF THE GROUP 3327 02:33:16,312 --> 02:33:21,718 WOE DID A SUBSEQUENT STUDY LOOK 3328 02:33:21,718 --> 02:33:24,654 AT THINGS WITH IMPROVEMENT AND 3329 02:33:24,654 --> 02:33:26,689 THIS IS A RETROSPECTIVE STUDY 3330 02:33:26,689 --> 02:33:29,626 LIKE THE PREVIOUS ONE AND ONCE 3331 02:33:29,626 --> 02:33:33,296 AGAIN ON THIS CASE OUR CRITERIA 3332 02:33:33,296 --> 02:33:36,032 FOR SURGERY WAS THE STRABISMUS 3333 02:33:36,032 --> 02:33:38,568 WAS STABLE, THEY HAD GOOD 3334 02:33:38,568 --> 02:33:40,403 CONTROL AND THE UNDERLYING 3335 02:33:40,403 --> 02:33:41,638 NEUROLOGIC CONDITION WAS STABLE 3336 02:33:41,638 --> 02:33:52,182 AND THE VISUAL ACUITY WAS 3 OF 6 3337 02:33:57,754 --> 02:34:02,959 AND IDENTIFIED GOOD OUTCOME AND 3338 02:34:02,959 --> 02:34:11,401 HALF HAD GOOD ALIGNMENT AFTER 3339 02:34:11,401 --> 02:34:16,306 AND ONES WHO HAD ONES WHO HAD 3340 02:34:16,306 --> 02:34:21,578 CEREBRAL PALSY IN BLUE HAD A 3341 02:34:21,578 --> 02:34:26,416 SLIGHTLY LESS FAVORABLE OUTCOME 3342 02:34:26,416 --> 02:34:29,552 WHICH CAN'T JUST REACH 3343 02:34:29,552 --> 02:34:30,553 STATISTICAL SIGNIFICANCE AND IF 3344 02:34:30,553 --> 02:34:33,690 YOU LOOK AT HOW THEY GROW OVER 3345 02:34:33,690 --> 02:34:41,331 TIME YOU CAN SEE THOSE WITH 3346 02:34:41,331 --> 02:34:44,267 CEREBRAL PALSY FAIL WITH TIME OF 3347 02:34:44,267 --> 02:34:47,904 FOLLOW-UP AFTER ABOUT 12 YEARS 3348 02:34:47,904 --> 02:34:53,176 OR SO THE VAST MAJORITY OF THEM 3349 02:34:53,176 --> 02:34:54,444 HAVE FAILED WHERE IS THOSE 3350 02:34:54,444 --> 02:34:56,613 WITHOUT CEREBRAL PALSY REMAINS 3351 02:34:56,613 --> 02:35:04,487 AT ABOUT 50% SUCCESS RATE. 3352 02:35:04,487 --> 02:35:08,124 THIS CHILD UNDERWENT STRABISMUS 3353 02:35:08,124 --> 02:35:12,395 SURGERY AND WAS STRAIGHT POST 3354 02:35:12,395 --> 02:35:17,634 OPERATION AND THERE WAS SOME 3355 02:35:17,634 --> 02:35:19,469 OCULARITY AND WE CONSIDER THAT 3356 02:35:19,469 --> 02:35:21,237 AN EXCELLENT OUTCOME. 3357 02:35:21,237 --> 02:35:24,841 IN SUMMARY, ONCE AGAIN WE 3358 02:35:24,841 --> 02:35:30,580 DIAGNOSED WITH CVI VISION LOST 3359 02:35:30,580 --> 02:35:31,748 WORSE THAN EXPECTED WITH DEGREE 3360 02:35:31,748 --> 02:35:33,416 OF PATHOLOGY AND THIS IS SUCH A 3361 02:35:33,416 --> 02:35:33,683 CASE. 3362 02:35:33,683 --> 02:35:36,185 IF YOU'RE DEALING WITH 3363 02:35:36,185 --> 02:35:39,122 HIGH-FUNCTIONING CVI, WHICH THIS 3364 02:35:39,122 --> 02:35:45,695 IS NOT AND MAY REQUIRE OTHER 3365 02:35:45,695 --> 02:35:53,002 MEASURES WE ASSESS THE VISION 3366 02:35:53,002 --> 02:35:54,070 FUNCTION AND MOST IMPROVE OVER 3367 02:35:54,070 --> 02:35:59,642 TIME IN OUR EXPERIENCE AND IN 3368 02:35:59,642 --> 02:36:07,750 OTHER REPORTS IT IMPROVES ABOUT 3369 02:36:07,750 --> 02:36:11,454 50% OF THE TIME AND SURGERY IS 3370 02:36:11,454 --> 02:36:14,457 AN OPTION IN KIDS WITH CVI 3371 02:36:14,457 --> 02:36:19,629 THOUGH THOSE WITH COMORBID 3372 02:36:19,629 --> 02:36:21,731 CEREBRAL PALSY ARE THOUGHT TO 3373 02:36:21,731 --> 02:36:24,267 HAVE WORSE OUTCOMES AND THIS IS 3374 02:36:24,267 --> 02:36:26,536 A CHILD WHO HAD AT LEAST OVER 3375 02:36:26,536 --> 02:36:29,138 ONE YEAR HAD GOOD OUTCOMES AND 3376 02:36:29,138 --> 02:36:31,174 DID HAVE CEREBRAL PALSY SO IT'S 3377 02:36:31,174 --> 02:36:40,183 NOT AN EXCLUSION THING FOR SURE. 3378 02:36:40,183 --> 02:36:41,417 THANK YOU VERY MUCH. 3379 02:36:41,417 --> 02:36:47,924 >> OUR NEXT TOPIC IS DR. ARVIND 3380 02:36:47,924 --> 02:36:51,227 CHANDNA HE'S A SENIOR CLINICIAN 3381 02:36:51,227 --> 02:36:54,197 SCIENTIST AND LEADS THE SEELAB 3382 02:36:54,197 --> 02:37:00,002 AT THE SMITH KETTLEWELL EYE 3383 02:37:00,002 --> 02:37:00,570 RESEARCH INSTITUTE. 3384 02:37:00,570 --> 02:37:01,070 >> THANK YOU VERY MUCH. 3385 02:37:01,070 --> 02:37:03,172 I'M PRIVILEGED TO BE HERE. 3386 02:37:03,172 --> 02:37:05,541 I STAND HERE ALONE BUT REPRESENT 3387 02:37:05,541 --> 02:37:08,177 A TEAM OF PEOPLE CARRYING ON THE 3388 02:37:08,177 --> 02:37:09,679 CVI RESEARCH PROGRAM AND ALSO 3389 02:37:09,679 --> 02:37:11,514 MORE IMPORTANTLY THE PARENTS AND 3390 02:37:11,514 --> 02:37:13,249 THE OLDER CHILDREN AND ADULTS 3391 02:37:13,249 --> 02:37:14,851 WHO PARTICIPATED IN OUR STUDY. 3392 02:37:14,851 --> 02:37:17,954 AND I WANT TO TALK ABOUT THE 3393 02:37:17,954 --> 02:37:19,155 UNSPOKEN CHILDREN OR CHILDREN WE 3394 02:37:19,155 --> 02:37:21,190 DON'T ASSESS BECAUSE THEY HAVE 3395 02:37:21,190 --> 02:37:23,459 GOOD VISUAL ACUITY AND DON'T 3396 02:37:23,459 --> 02:37:24,660 THINK THEY HAVE CVI AND THE 3397 02:37:24,660 --> 02:37:28,731 CHALLENGES ARE IN CONCERT WITH 3398 02:37:28,731 --> 02:37:31,334 THE STANDARD OF VISUAL ACUITY 3399 02:37:31,334 --> 02:37:32,902 AND VISION IS MORE THAN VISUAL 3400 02:37:32,902 --> 02:37:41,210 ACU 3401 02:37:41,210 --> 02:37:41,644 ACU 3402 02:37:41,644 --> 02:37:45,681 ACUITY. 3403 02:37:45,681 --> 02:37:50,720 1 IN 30 CHILDREN MAYBE 3404 02:37:50,720 --> 02:37:52,155 UNDIAGNOSED AND WE'RE BEGINNING 3405 02:37:52,155 --> 02:37:55,391 TO TALK ABOUT IT AND REMEMBER 3406 02:37:55,391 --> 02:37:56,426 THERE'S NO MENTION OF VISUAL 3407 02:37:56,426 --> 02:38:01,197 ACUITY IN THE DEFINITION. 3408 02:38:01,197 --> 02:38:02,965 SO VISUAL FUNCTION VISUAL 3409 02:38:02,965 --> 02:38:03,199 ACUITY. 3410 02:38:03,199 --> 02:38:05,601 HERE WE ARE. 3411 02:38:05,601 --> 02:38:06,836 THE CHARACTERISTIC FIGURE IN 3412 02:38:06,836 --> 02:38:10,606 VISUAL IMPAIRMENT AND DORSAL 3413 02:38:10,606 --> 02:38:13,676 STREAM WITH THE PATHWAY AND THE 3414 02:38:13,676 --> 02:38:16,112 ACTION PATHWAY ALSO CALLED THE 3415 02:38:16,112 --> 02:38:17,513 NON-CONSCIOUS PATHWAY WE USE ALL 3416 02:38:17,513 --> 02:38:22,151 THE TIME WITHOUT KNOWING IT AND 3417 02:38:22,151 --> 02:38:25,688 THE VISUAL FUNCTIONS ASSIGNED 3418 02:38:25,688 --> 02:38:27,390 WHICH ARE ALL HIGHER VISUAL 3419 02:38:27,390 --> 02:38:29,692 PERCEPTUAL FUNCTIONS AND ALSO 3420 02:38:29,692 --> 02:38:31,694 NOW WE HAVE THIS IS THE 3421 02:38:31,694 --> 02:38:32,728 CONSCIOUS VISION AND WE HAVE 3422 02:38:32,728 --> 02:38:34,130 INFORMATION ABOUT THE 3423 02:38:34,130 --> 02:38:37,700 INTERCONNECTED PATHWAYS THE 3424 02:38:37,700 --> 02:38:43,272 VERTICAL OCCIPITAL KONGS AND IT 3425 02:38:43,272 --> 02:38:45,274 INTEGRATES THE FUNCTIONS IN THE 3426 02:38:45,274 --> 02:38:49,946 VISUALLY GUIDED BEHAVIORS. 3427 02:38:49,946 --> 02:38:56,018 AND THEREFORE THE FUNCTIONS 3428 02:38:56,018 --> 02:38:58,221 ASCRIBED ARE NOT TOTALLY KNOWN 3429 02:38:58,221 --> 02:38:59,489 YET BUT HAVE VISUAL REACHING. 3430 02:38:59,489 --> 02:39:01,090 THERE'S A PROBLEM IN CVI AND 3431 02:39:01,090 --> 02:39:02,425 WHAT GOES ON? 3432 02:39:02,425 --> 02:39:05,595 HERE ARE SOME OF THE VISUAL 3433 02:39:05,595 --> 02:39:07,763 PERCEPTUAL DEFICITS THAT OCCUR 3434 02:39:07,763 --> 02:39:12,101 IN THE DORSAL PATHWAY COMMONLY 3435 02:39:12,101 --> 02:39:13,135 SUSCEPTIBLE BUT IT DOESN'T 3436 02:39:13,135 --> 02:39:15,638 EXPLAIN IT ALL. 3437 02:39:15,638 --> 02:39:21,010 THERE'S AN INFINITE VISUAL 3438 02:39:21,010 --> 02:39:22,078 PERCEPTUAL GUIDED CHALLENGES 3439 02:39:22,078 --> 02:39:26,582 FACE DESPITE HAVING NORMAL 3440 02:39:26,582 --> 02:39:28,684 VISION ACUITY AND NONE OF THIS 3441 02:39:28,684 --> 02:39:33,689 HAS TO DO WITH VISUAL ACUITY AND 3442 02:39:33,689 --> 02:39:35,191 THEY PRODUCED THE QUESTION WHICH 3443 02:39:35,191 --> 02:39:37,260 COVERS A LARGE POPULATION OF 3444 02:39:37,260 --> 02:39:43,933 THIS MULTI-LAYERED, 3445 02:39:43,933 --> 02:39:45,201 MULTI-DIMENSIONAL CONDITION AND 3446 02:39:45,201 --> 02:39:46,269 HIGH VISUAL QUESTION CAN WHICH 3447 02:39:46,269 --> 02:39:51,007 WE STARTED USING IN 2019 AND 3448 02:39:51,007 --> 02:39:56,646 USED IN CVI CHILDREN WITH NORMAL 3449 02:39:56,646 --> 02:39:57,613 VISUAL ACUITY AND REFERRED TO 3450 02:39:57,613 --> 02:39:59,882 THE EYE DEPARTMENT BY MULTIPLE 3451 02:39:59,882 --> 02:40:02,718 REFERRALS AND HAD AN INDEPENDENT 3452 02:40:02,718 --> 02:40:04,287 DIAGNOSIS OF IMPAIRMENT BEFORE 3453 02:40:04,287 --> 02:40:09,425 WE APPLIED THE QUESTION AND IT 3454 02:40:09,425 --> 02:40:15,197 WAS APPLIED BY NAIVE TESTERS. 3455 02:40:15,197 --> 02:40:17,400 THE HIGH VISION FUNCTION 3456 02:40:17,400 --> 02:40:21,537 INVENTORY IS BASED ON A PAPER 3457 02:40:21,537 --> 02:40:23,706 WITH A SCORING SYSTEM FROM 0 TO 3458 02:40:23,706 --> 02:40:28,244 4 NOW 1 TO 5 AND GOES FROM DOES 3459 02:40:28,244 --> 02:40:30,046 YOUR CHILD HAVE THIS DIFFICULTY, 3460 02:40:30,046 --> 02:40:31,948 NEVER, RARELY, SOMETIMES, ALWAYS 3461 02:40:31,948 --> 02:40:37,687 AND PICK UP THINGS THE CHILD OR 3462 02:40:37,687 --> 02:40:43,192 PARENT OBSERVES CAN DO CANNOT 3463 02:40:43,192 --> 02:40:45,828 CAN DO WHICH NEVER OR CAN DO 3464 02:40:45,828 --> 02:40:48,197 THROUGH THEIR OBSERVATIONS. 3465 02:40:48,197 --> 02:40:50,666 WE USE THIS IN THE FIRST STUDY 3466 02:40:50,666 --> 02:40:53,302 THEN AFTER A PILOT STUDY WE 3467 02:40:53,302 --> 02:40:55,404 FOUND THAT IT IS BEST TO CONVERT 3468 02:40:55,404 --> 02:41:00,943 THAT TO AN APPLICATION AND 3469 02:41:00,943 --> 02:41:02,712 ESPECIALLY PROFESSOR DUTTON 3470 02:41:02,712 --> 02:41:04,513 MODIFIED AND PRODUCED AN APP AND 3471 02:41:04,513 --> 02:41:09,852 I CAN SHOW YOU A SHORT 3472 02:41:09,852 --> 02:41:15,858 DEMONSTRA 3473 02:41:15,858 --> 02:41:17,994 DEMONSTRATION, I HOPE I CAN BUT 3474 02:41:17,994 --> 02:41:24,767 THE QR CODE WILL GIVE A 3475 02:41:24,767 --> 02:41:26,268 DEMONSTRATION AND PLEASE SHARE 3476 02:41:26,268 --> 02:41:26,736 WITH OTHER PEOPLE. 3477 02:41:26,736 --> 02:41:27,536 THANK YOU. 3478 02:41:27,536 --> 02:41:29,605 I'LL MOVE ON. 3479 02:41:29,605 --> 02:41:32,875 HERE I'LL MOVE STRAIGHT TO THE 3480 02:41:32,875 --> 02:41:34,910 RESULTS AND YOU CAN SEE THE 3481 02:41:34,910 --> 02:41:37,279 SCORE 0-5 ON THE VERTICAL AXIS 3482 02:41:37,279 --> 02:41:39,515 AND EVERY QUESTION SCORE FOR THE 3483 02:41:39,515 --> 02:41:43,319 WHOLE GROUP OF THESE 33 CHILDREN 3484 02:41:43,319 --> 02:41:45,688 WITH NORMAL VISUAL ACUITY AND 3485 02:41:45,688 --> 02:41:47,590 112 NEUROTYPICAL CHILDREN AND 3486 02:41:47,590 --> 02:41:50,292 EACH OF THOSE SCORES WILL COME 3487 02:41:50,292 --> 02:41:51,060 UP FOR THE 51 QUESTIONS AT THE 3488 02:41:51,060 --> 02:42:00,403 TIME. 3489 02:42:00,403 --> 02:42:02,204 YOU CAN SEE THE CLEAR DIFFERENCE 3490 02:42:02,204 --> 02:42:03,239 IN THEIR SCORES. 3491 02:42:03,239 --> 02:42:05,941 YOU CAN ALSO SEE FURTHER DOWN ON 3492 02:42:05,941 --> 02:42:08,444 THE CHART THERE ARE SOME 3493 02:42:08,444 --> 02:42:08,744 OVERLAPPING. 3494 02:42:08,744 --> 02:42:11,080 AND THESE QUESTIONS ARE 3495 02:42:11,080 --> 02:42:12,615 CLUSTERED ACCORDING TO THE 3496 02:42:12,615 --> 02:42:13,683 VISUAL PERCEPTUAL DEFICIT HAVING 3497 02:42:13,683 --> 02:42:20,556 TO DO WITH DORSAL STREAM AND 3498 02:42:20,556 --> 02:42:23,592 THESE WITH THE RENTAL STREAM AND 3499 02:42:23,592 --> 02:42:26,829 THERE WERE DORSAL STREAM 3500 02:42:26,829 --> 02:42:28,531 DEFICITS DESPITE NORMAL ACUITY 3501 02:42:28,531 --> 02:42:34,070 AND DIDN'T HAVE SA SEVERE 3502 02:42:34,070 --> 02:42:37,673 DEFICIT AND WE SEE YOU THE EEG 3503 02:42:37,673 --> 02:42:47,783 TESTS. 3504 02:42:53,656 --> 02:42:58,427 HERE RED AND THE MEDIAN SCORE IS 3505 02:42:58,427 --> 02:43:00,296 AROUND TWO WHEREAS FOR THE 3506 02:43:00,296 --> 02:43:02,832 NEUROTYPICALS IS ABOUT ZERO AND 3507 02:43:02,832 --> 02:43:06,469 THE CLEAR DIFFERENCE OF THE 3508 02:43:06,469 --> 02:43:09,538 QUARTILES THE 75% OF DIFFERENCES 3509 02:43:09,538 --> 02:43:11,607 ARE HUGELY DIFFERENT AND 3510 02:43:11,607 --> 02:43:13,008 STATISTICALLY SIGNIFICANT. 3511 02:43:13,008 --> 02:43:15,377 WE CAN'T ASK ALL 51 QUESTIONS. 3512 02:43:15,377 --> 02:43:18,581 WE WANTED TO KNOW WHETHER SOME 3513 02:43:18,581 --> 02:43:20,282 QUESTIONS WERE MORE 3514 02:43:20,282 --> 02:43:24,086 DISCRIMINATORY THAN ANOTHER AND 3515 02:43:24,086 --> 02:43:28,791 COMPARED THE SCORE BY DIVIDING 3516 02:43:28,791 --> 02:43:30,192 IT INTO DIFFERENT SECTORS AND 3517 02:43:30,192 --> 02:43:32,528 RATHER THAN GOING IN THE DETAIL 3518 02:43:32,528 --> 02:43:34,597 I CAN SHOW YOU THAT WHENEVER WAY 3519 02:43:34,597 --> 02:43:37,633 YOU SLICE THIS WE FOUND 3520 02:43:37,633 --> 02:43:38,567 SIGNIFICANT DIFFERENCES A PART 3521 02:43:38,567 --> 02:43:40,136 FROM THE ALWAYS QUESTION. 3522 02:43:40,136 --> 02:43:41,604 AND A SHORT STORY, THIS IS 3523 02:43:41,604 --> 02:43:41,871 PUBLISHED. 3524 02:43:41,871 --> 02:43:43,572 YOU CAN LOOK AT THE DETAILS BUT 3525 02:43:43,572 --> 02:43:44,974 WE FOUND 11 QUESTIONS YOU CAN 3526 02:43:44,974 --> 02:43:46,008 SEE THEM IN RED. 3527 02:43:46,008 --> 02:43:48,210 THEY'RE THE TOP SCORERS. 3528 02:43:48,210 --> 02:43:51,413 FROM THIS ANALYSIS AND THE TOP 3529 02:43:51,413 --> 02:43:54,316 11 DISTINGUISHED FROM THE 3530 02:43:54,316 --> 02:43:55,985 NEUROTYPICAL AND THIS WAS FROM 3531 02:43:55,985 --> 02:43:58,921 THE CHILDREN WITH NORMAL VISUAL 3532 02:43:58,921 --> 02:43:59,622 ACUTE. 3533 02:43:59,622 --> 02:44:04,460 -- ACUITY AND WE WENT FROM 21 TO 3534 02:44:04,460 --> 02:44:04,627 23. 3535 02:44:04,627 --> 02:44:08,230 WE HAVE THE SAME QUESTIONNAIRE 3536 02:44:08,230 --> 02:44:10,399 AND THESE ARE DIFFERENT LEVELS 3537 02:44:10,399 --> 02:44:13,669 OF VISUAL ACUITY AND HOW THEY 3538 02:44:13,669 --> 02:44:15,337 COMPARE THE CHILDREN WITH NORMAL 3539 02:44:15,337 --> 02:44:17,606 VISUAL ACUITY AND YOU CAN SEE 3540 02:44:17,606 --> 02:44:22,912 THE PICTURE IS EXACTLY THE SAME. 3541 02:44:22,912 --> 02:44:25,314 IT'S EMBARRASS TO SHOW THE 3542 02:44:25,314 --> 02:44:28,117 MIRROR IMAGE OF THE PREVIOUS 3543 02:44:28,117 --> 02:44:31,387 STUDY IN YELLOW DOWN BELOW. 3544 02:44:31,387 --> 02:44:32,388 COMBINED DATA. 3545 02:44:32,388 --> 02:44:33,322 WE KNOW THERE'S NO DIFFERENCE AT 3546 02:44:33,322 --> 02:44:33,789 ANY LEVEL. 3547 02:44:33,789 --> 02:44:36,058 WE COMBINE THE DATA IN FIGURE 1 3548 02:44:36,058 --> 02:44:38,828 AND IT LOOKS NO DIFFERENT THAN 3549 02:44:38,828 --> 02:44:43,699 THE OVER ALL DATA BETWEEN CVI 3550 02:44:43,699 --> 02:44:48,804 AND THE VALUES ARE LESS AND THE 3551 02:44:48,804 --> 02:44:59,481 FIGURE 2 LOOKS AT WHETHER WE CAN 3552 02:44:59,481 --> 02:45:02,451 FIND THE DIFFERENCE AND THESE 10 3553 02:45:02,451 --> 02:45:04,553 QUESTIONS ARE PRODUCED BY 3554 02:45:04,553 --> 02:45:05,621 MACHINE LEARNING. 3555 02:45:05,621 --> 02:45:11,093 MOVING ON, THE SCORE AND WHAT 3556 02:45:11,093 --> 02:45:17,533 WE'RE INTERESTED IN THE HIGH 3557 02:45:17,533 --> 02:45:28,010 VISUAL DEFICITS AND LOOK AT 3558 02:45:37,319 --> 02:45:37,887 VISUAL ACUITY. 3559 02:45:37,887 --> 02:45:40,923 SHOWING THIS ASSESSMENT IS AS 3560 02:45:40,923 --> 02:45:43,759 IMPORTANT IN CHILDREN WITH LOWER 3561 02:45:43,759 --> 02:45:47,796 VISUAL ACUITY AS WITH CHILDREN 3562 02:45:47,796 --> 02:45:50,633 WITH LOWER VISUAL ACUITY AND 3563 02:45:50,633 --> 02:45:51,267 INDEPENDENT CORROBORATION OF 3564 02:45:51,267 --> 02:45:51,767 THIS. 3565 02:45:51,767 --> 02:45:53,302 THIS IS THE PART I NEED TO 3566 02:45:53,302 --> 02:45:54,336 EXPLAIN A LITTLE BIT BEFORE WE 3567 02:45:54,336 --> 02:45:56,672 MOVE ON. 3568 02:45:56,672 --> 02:45:58,974 THE SKEPTICS INCLUDING MYSELF 3569 02:45:58,974 --> 02:46:01,310 INITIALLY AND ALL OF US IN THE 3570 02:46:01,310 --> 02:46:05,414 AUDIENCE WHY SHOULD WE BELIEVE 3571 02:46:05,414 --> 02:46:07,283 THE PARENT OBSERVATIONS? 3572 02:46:07,283 --> 02:46:08,784 PARENTS WOULD LIKE TO SAY THEIR 3573 02:46:08,784 --> 02:46:13,689 CHILD IS VERY EFFECTIVE, IN MY 3574 02:46:13,689 --> 02:46:16,425 OPINION HIGH AND WHAT IS THE 3575 02:46:16,425 --> 02:46:18,994 CORROBORATION OF THE DEFICIT? 3576 02:46:18,994 --> 02:46:20,262 THE ANSWER MAY LAY IN A 3577 02:46:20,262 --> 02:46:21,697 TECHNIQUE WE WERE USING CALLED 3578 02:46:21,697 --> 02:46:28,404 THE EEG AND USED ELECTRODES AND 3579 02:46:28,404 --> 02:46:33,442 IN RESPONSE TO VISUAL STIMULUS 3580 02:46:33,442 --> 02:46:41,250 CALLED STEADY STATE AND IF YOU 3581 02:46:41,250 --> 02:46:43,085 AT THE RIGHT THE STIMULUS GOES 3582 02:46:43,085 --> 02:46:45,688 FROM EASY THINGS TO SEE TO 3583 02:46:45,688 --> 02:46:48,524 SOMETIMES DIFFICULT THINGS TO 3584 02:46:48,524 --> 02:46:51,226 SEE AND THERE WE CAN PRODUCE 3585 02:46:51,226 --> 02:46:52,962 STIMULUS FROM VARIOUS KINDS OF 3586 02:46:52,962 --> 02:46:53,629 VISUAL FUNCTION THAT HAVE 3587 02:46:53,629 --> 02:47:00,736 NOTHING TO DO WITH VISUAL ACUITY 3588 02:47:00,736 --> 02:47:02,738 WHICH IS PRODUCING COMPLEX 3589 02:47:02,738 --> 02:47:04,206 MOTION AND FACE PROCESSING BUT 3590 02:47:04,206 --> 02:47:05,274 NOT RECOGNITION YET. 3591 02:47:05,274 --> 02:47:07,376 THESE ARE SOME OF THE STIMULI. 3592 02:47:07,376 --> 02:47:10,612 I CAN SHOW YOU RESULTS OF THESE 3593 02:47:10,612 --> 02:47:12,514 CHILDREN WITH NORMAL VISUAL 3594 02:47:12,514 --> 02:47:17,152 ACUITY THE SAME CHILDREN 3595 02:47:17,152 --> 02:47:18,287 INDEPENDENTLY IN THE STEADY 3596 02:47:18,287 --> 02:47:20,622 SPACE VEP. 3597 02:47:20,622 --> 02:47:23,325 HERE WE STUDIED 35 CHILDREN, 3598 02:47:23,325 --> 02:47:29,598 SAME, 27 NEUROTYPICAL CHILDREN 3599 02:47:29,598 --> 02:47:35,604 AND THIS IS A CARTOON OF THE 3600 02:47:35,604 --> 02:47:37,373 FIVE ELECTRODES AND THE CHILD 3601 02:47:37,373 --> 02:47:40,342 AND IT SPANS THE AREA OF THE 3602 02:47:40,342 --> 02:47:41,677 VISUAL CORTEX AND SURROUNDING 3603 02:47:41,677 --> 02:47:47,182 AREAS, REAR, VENTRAL AND DORSAL. 3604 02:47:47,182 --> 02:47:52,354 WHEN YOU SHOW A STIMULUS AND 3605 02:47:52,354 --> 02:47:53,622 STARTS OFF SWEEPING AND YOU GET 3606 02:47:53,622 --> 02:47:57,493 A RISE IN AMPLITUDE SHOWED IN 3607 02:47:57,493 --> 02:48:02,031 THE BLACK LINE VERTICAL AXIS AS 3608 02:48:02,031 --> 02:48:03,432 THE STIMULUS BECOMES MORE VISUAL 3609 02:48:03,432 --> 02:48:05,000 AND AT WHAT POINT DID THE CHILD 3610 02:48:05,000 --> 02:48:07,603 SEE THE STIMULUS AND HOW DID 3611 02:48:07,603 --> 02:48:08,837 THEY RESPOND TO THE STIMULUS 3612 02:48:08,837 --> 02:48:11,373 SWEEPING ACROSS AND BECOMING 3613 02:48:11,373 --> 02:48:13,075 MORE AND MORE VISUAL CALLED 3614 02:48:13,075 --> 02:48:14,543 VISUAL PROCESSING. 3615 02:48:14,543 --> 02:48:15,744 THAT'S THE RESPONSE. 3616 02:48:15,744 --> 02:48:17,446 WE CAN ANALYZE BOTH THINGS. 3617 02:48:17,446 --> 02:48:20,816 WE GET TWO ANSWERS IN ONE. 3618 02:48:20,816 --> 02:48:29,591 I'M GOING TO SHOW YOU THIS. 3619 02:48:29,591 --> 02:48:33,028 I'M GOING TO SHOW YOU THE 3620 02:48:33,028 --> 02:48:35,164 ELECTRODES LEFT TO RIGHT. 3621 02:48:35,164 --> 02:48:36,965 YOU SEE THE STATISTICAL 3622 02:48:36,965 --> 02:48:41,603 SIGNIFICANCE IF IT DIPS BELOW 3623 02:48:41,603 --> 02:48:45,574 THE DOTTED LINE IT'S HIGHLY 3624 02:48:45,574 --> 02:48:45,874 SIGNIFICANT. 3625 02:48:45,874 --> 02:48:52,781 NOW, IT IS THE TOP ROW, AGAIN, 3626 02:48:52,781 --> 02:48:55,918 NEUROTYPICAL, 33 AND 35 CVI AND 3627 02:48:55,918 --> 02:48:59,254 BLUE FOR NEUROTYPICAL AND I'LL 3628 02:48:59,254 --> 02:49:00,522 SPEND TIME ON THIS AND 3629 02:49:00,522 --> 02:49:02,424 EVERYTHING IS THE SAME. 3630 02:49:02,424 --> 02:49:04,860 THE VERTICAL AXIS SHOWS THE 3631 02:49:04,860 --> 02:49:06,295 AMPLITUDE OR HOW HIGH DID THE 3632 02:49:06,295 --> 02:49:07,196 RESPONSE GO AND LITTLE SQUARES 3633 02:49:07,196 --> 02:49:09,665 ON THE BOTTOM IS THE NOISE LEVEL 3634 02:49:09,665 --> 02:49:13,669 WHICH IS LOW AND THE SIGNAL 3635 02:49:13,669 --> 02:49:16,538 RISES AND GOES UP AS THE 3636 02:49:16,538 --> 02:49:19,541 STIMULUS BECOMES MORE VISIBLE. 3637 02:49:19,541 --> 02:49:21,677 THIS IS A RESPONSE AND VISUAL 3638 02:49:21,677 --> 02:49:21,910 ACUITY. 3639 02:49:21,910 --> 02:49:26,381 YOU CAN SEE IT IS ONLY SHIITELY 3640 02:49:26,381 --> 02:49:27,216 SIGNIFICANT IN THE THRESHOLD OR 3641 02:49:27,216 --> 02:49:29,151 FINAL RESPONSE AND THAT DIPS 3642 02:49:29,151 --> 02:49:31,587 DOWN THE REST IS EXACTLY THE 3643 02:49:31,587 --> 02:49:33,222 SAME, NOT STATISTICALLY 3644 02:49:33,222 --> 02:49:35,524 SIGNIFICANT BETWEEN THE 3645 02:49:35,524 --> 02:49:36,825 NEUROTYPICALS AND CVI THOUGH 3646 02:49:36,825 --> 02:49:38,594 THERE IS SOME DIFFERENCE. 3647 02:49:38,594 --> 02:49:41,597 THEY HAD NORMAL VISUAL ACUITY. 3648 02:49:41,597 --> 02:49:46,768 WE EXPECT IT TO BE NORMAL. 3649 02:49:46,768 --> 02:49:49,771 YOU CAN SEE THIS IS A DISPLACE 3650 02:49:49,771 --> 02:49:51,507 MANY. 3651 02:49:51,507 --> 02:49:53,609 WHAT OTHER ACUITIES CAN YOU SEE 3652 02:49:53,609 --> 02:49:54,376 IN THE STRAIGHT LINE? 3653 02:49:54,376 --> 02:50:04,920 THE NEXT ONE IS ABSOLUTE MOTION 3654 02:50:30,646 --> 02:50:35,551 AND THE SIDE ELECTRODES DON'T 3655 02:50:35,551 --> 02:50:36,518 RECORD BECAUSE IT'S PROCESSED IN 3656 02:50:36,518 --> 02:50:38,921 THE BACK IN THE VISUAL CORTEX. 3657 02:50:38,921 --> 02:50:39,588 THERE'S NO DIFFERENCE IN THE TWO 3658 02:50:39,588 --> 02:50:49,932 GROUPS OF CHILDREN. 3659 02:50:57,639 --> 02:51:00,442 IF YOU LOOK AT THE QUESTION THIS 3660 02:51:00,442 --> 02:51:04,980 WAS HIGH SCORING. 3661 02:51:04,980 --> 02:51:05,614 MOTION DEFICITS WAS HIGH SCORING 3662 02:51:05,614 --> 02:51:15,924 IN THE INVENTORY. 3663 02:51:22,030 --> 02:51:26,201 AND HERE YOU CAN SEE THE 3664 02:51:26,201 --> 02:51:29,605 COMMONIST PROBLEM THE 33 3665 02:51:29,605 --> 02:51:33,041 CHILDREN HAD WAS TO FIND 3666 02:51:33,041 --> 02:51:35,544 SOMETHING UP A CROWDED PLACE AND 3667 02:51:35,544 --> 02:51:41,617 THE CVI CHILDREN ARE NOT 3668 02:51:41,617 --> 02:51:51,827 RESPONDING. 3669 02:51:56,431 --> 02:52:06,908 AND THIS IS NOT ABOVE IT REPEATS 3670 02:52:10,712 --> 02:52:13,582 ITSELF AND WE DON'T HAVE THE 3671 02:52:13,582 --> 02:52:24,126 DIFFERENCE BETWEEN THE TWO EYES. 3672 02:52:29,464 --> 02:52:31,667 AND THE HIGH VISUAL AND THE 3673 02:52:31,667 --> 02:52:32,934 CORROBORATION OF THOSE AFFECTED 3674 02:52:32,934 --> 02:52:35,437 AND PRESERVED. 3675 02:52:35,437 --> 02:52:37,139 AND FOR THE DIAGNOSIS OF HIGH 3676 02:52:37,139 --> 02:52:40,075 VISUAL FUNCTION DEFICITS NOT 3677 02:52:40,075 --> 02:52:40,242 CVI. 3678 02:52:40,242 --> 02:52:43,879 THE CALL IN THE DIAGNOSIS OF 3679 02:52:43,879 --> 02:52:44,046 CVI. 3680 02:52:44,046 --> 02:52:46,715 HOPEFULLY WE CAN PRESENT IN THE 3681 02:52:46,715 --> 02:52:48,617 NEXT FEW MONTHS AND MULTIPLE 3682 02:52:48,617 --> 02:52:50,052 FEATURES WE HAVE IN THE APP IS 3683 02:52:50,052 --> 02:52:53,055 IDEAL FOR RESEARCH STUDIES AND 3684 02:52:53,055 --> 02:52:53,689 AS ONE SHOWN EARLIER IN THE 3685 02:52:53,689 --> 02:52:57,659 MODEL. 3686 02:52:57,659 --> 02:53:08,003 THANK YOU VERY MUCH. 3687 02:53:08,603 --> 02:53:11,206 THERE'S BEEN A TEAM INVOLVED IN 3688 02:53:11,206 --> 02:53:18,714 THE WORK AND THE STIMULI WAS 3689 02:53:18,714 --> 02:53:20,549 DONE AS A TEAM AND PARTICIPANTS 3690 02:53:20,549 --> 02:53:25,620 WERE CHILDREN AND WE HAVE AN 3691 02:53:25,620 --> 02:53:26,521 ACTIVE PARENT DISCUSSION GROUP 3692 02:53:26,521 --> 02:53:33,128 RUN BY A PARENT AND CVI AND THEY 3693 02:53:33,128 --> 02:53:40,402 WERE HELP ED THANK YOU VERY MUC. 3694 02:53:40,402 --> 02:53:41,370 >> THANK YOU. 3695 02:53:41,370 --> 02:53:44,005 NEXT WE'LL HAVE DR. SHAH TALKING 3696 02:53:44,005 --> 02:53:46,041 ABOUT CVI WITH OCULAR 3697 02:53:46,041 --> 02:53:48,710 COMORBIDITIES. 3698 02:53:48,710 --> 02:53:51,646 HE'S ASSISTANT PROFESSOR IN THE 3699 02:53:51,646 --> 02:53:55,650 DIVISION OF OPHTHALMOLOGY AND 3700 02:53:55,650 --> 02:53:59,554 PRACTICES AT CINCINNATI 3701 02:53:59,554 --> 02:54:01,523 CHILDREN'S HOSPITAL MEDICAL 3702 02:54:01,523 --> 02:54:01,757 CENTER. 3703 02:54:01,757 --> 02:54:03,392 >> HELLO. 3704 02:54:03,392 --> 02:54:04,192 GOOD AFTERNOON, EVERYBODY. 3705 02:54:04,192 --> 02:54:07,796 I HOPE NOBODY'S IN A FOOD COMA 3706 02:54:07,796 --> 02:54:12,167 AT THE MOMENT. 3707 02:54:12,167 --> 02:54:17,272 I AM A GIANT BRONZE MAN WITH A 3708 02:54:17,272 --> 02:54:25,480 BOW TIE AND A BLUE SUIT AND I'M 3709 02:54:25,480 --> 02:54:29,184 ACTUALLY SMALL, BROWNISH AND BOW 3710 02:54:29,184 --> 02:54:32,020 TIE WEARER, BLUE SUIT. 3711 02:54:32,020 --> 02:54:34,256 SO THIS IS -- IT'S FUNNY. 3712 02:54:34,256 --> 02:54:38,059 I JUST LISTENED TO THE PREVIOUS 3713 02:54:38,059 --> 02:54:38,860 TWO TALKS WHICH ARE EXCELLENT 3714 02:54:38,860 --> 02:54:42,431 AND TALK ABOUT CVI AND OCULAR 3715 02:54:42,431 --> 02:54:42,764 COMORBIDITIES. 3716 02:54:42,764 --> 02:54:43,432 HERE'S MY FINANCIAL DISCLOSURES 3717 02:54:43,432 --> 02:54:45,667 NOT RELEVANT TO THIS TALK. 3718 02:54:45,667 --> 02:54:47,202 I'VE BEEN TASKED TO DESCRIBE 3719 02:54:47,202 --> 02:54:50,071 COMMON OCULAR COMORBIDITIES THAT 3720 02:54:50,071 --> 02:54:52,374 PRESENT IN CHILDREN WITH CVI. 3721 02:54:52,374 --> 02:54:53,341 I BROUGHT THIS UP IN FOUR 3722 02:54:53,341 --> 02:54:54,776 SECTIONS. 3723 02:54:54,776 --> 02:54:56,711 I KNOW WE HAVE PEOPLE FROM SO 3724 02:54:56,711 --> 02:54:57,879 MANY DIFFERENT LEVEL AND TAKE 3725 02:54:57,879 --> 02:55:00,081 CARE OF OUR CHILDREN WITH CVI. 3726 02:55:00,081 --> 02:55:03,018 MY GOAL FOR THIS WAS TO BRIDGE 3727 02:55:03,018 --> 02:55:05,620 THAT DIVIDE AND TALK ABOUT THE 3728 02:55:05,620 --> 02:55:06,621 OCULAR COMORBIDITIES. 3729 02:55:06,621 --> 02:55:08,990 ONE IS AFFERENT SYSTEM OUT TO 3730 02:55:08,990 --> 02:55:11,893 THE RETINA AND OPTIC NERVE AND 3731 02:55:11,893 --> 02:55:16,798 EFFERENT SYSTEM AND OCULAR 3732 02:55:16,798 --> 02:55:18,233 DYSMOTILITY AND STA BIS MUSS AND 3733 02:55:18,233 --> 02:55:19,568 REFRACTIVE ERROR AND 3734 02:55:19,568 --> 02:55:21,670 ACCOMMODATION OF DYSFUNCTION AND 3735 02:55:21,670 --> 02:55:25,173 A FOURTH IS CONGENITAL OCULAR 3736 02:55:25,173 --> 02:55:26,475 ABNORMALITIES ASSOCIATED WITH 3737 02:55:26,475 --> 02:55:28,577 MALDEVELOPMENT OR GENETIC 3738 02:55:28,577 --> 02:55:28,877 ETIOLOGIES. 3739 02:55:28,877 --> 02:55:32,214 STARTING WITH THE RETINA AND 3740 02:55:32,214 --> 02:55:35,217 OPTIC NERVE DISORDERS OF THE 3741 02:55:35,217 --> 02:55:41,590 AFFERENT VISUAL PATHWAY. 3742 02:55:41,590 --> 02:55:48,730 AND TALKING ABOUT ANTERIOR 3743 02:55:48,730 --> 02:55:51,600 PATHWAY DYSFUNCTION AND WHEN YOU 3744 02:55:51,600 --> 02:55:54,736 TALK ABOUT SEQUELAE PREMATURITY 3745 02:55:54,736 --> 02:56:00,575 AND VISUAL IMPAIRMENT WE SEE 3746 02:56:00,575 --> 02:56:02,077 WITH PREMATURITY POSTERIOR 3747 02:56:02,077 --> 02:56:07,249 PATHWAYS AND THESE ARE 3748 02:56:07,249 --> 02:56:16,725 ASSOCIATED WITH CVI. 3749 02:56:16,725 --> 02:56:20,595 AND I WANT TO TAKE A MOMENT TO 3750 02:56:20,595 --> 02:56:29,237 TALK ABOUT ROP RETINOPATHY 3751 02:56:29,237 --> 02:56:30,872 PREMATURITY AND THE VESSELS. 3752 02:56:30,872 --> 02:56:35,610 IT'S REALLY AN ISSUE WITH 3753 02:56:35,610 --> 02:56:38,280 ABNORMAL NEOVASCULARIZATION AND 3754 02:56:38,280 --> 02:56:41,349 THERE'S ENOUGH NUANCES FOR THE 3755 02:56:41,349 --> 02:56:44,052 PUBLIC TO KNOW AND THERE'S WAYS 3756 02:56:44,052 --> 02:56:46,021 TO CLASSIFY THIS IN TERMS OF THE 3757 02:56:46,021 --> 02:56:48,790 SEVERITY OF RETINOPATHY OR 3758 02:56:48,790 --> 02:56:49,658 PREMATURITY BASED ON THE 3759 02:56:49,658 --> 02:56:51,826 LOCATION OF WHAT WE CALL THE 3760 02:56:51,826 --> 02:57:02,304 AVASCULAR AND VASCULAR ZONE. 3761 02:57:20,622 --> 02:57:21,923 WE HAVE TO THE OPTIC NERVE AND 3762 02:57:21,923 --> 02:57:26,761 THIS RETINA AND WHERE THE IMAGES 3763 02:57:26,761 --> 02:57:29,631 FALL ON THERE AND THEY ARE 3764 02:57:29,631 --> 02:57:32,834 SENDING LITTLE WIRES AND THE 3765 02:57:32,834 --> 02:57:34,936 OPTIC NERVE GOES TO THE BRAIN 3766 02:57:34,936 --> 02:57:36,571 AND OCCIPITAL LOBE. 3767 02:57:36,571 --> 02:57:38,006 YOU CAN SEE WHERE THE HIGH REAL 3768 02:57:38,006 --> 02:57:40,675 ESTATE VISION AND IF YOU HAVE 3769 02:57:40,675 --> 02:57:43,511 ABNORMAL VESSELS CLOSER TO THIS 3770 02:57:43,511 --> 02:57:45,280 LOCATION IT'S MORE CONCERNING 3771 02:57:45,280 --> 02:57:53,588 AND SOME OF THECAL COMPLICATIONS 3772 02:57:53,588 --> 02:57:55,557 MACULAR DRAGGING IF THEY DRAG 3773 02:57:55,557 --> 02:57:58,893 THE HIGH REAL ESTATE AREA AND 3774 02:57:58,893 --> 02:58:07,869 HIGH MYOPIA AND STRABISMUS WHICH 3775 02:58:07,869 --> 02:58:14,609 IS OCULAR MISALIGNMENT. 3776 02:58:14,609 --> 02:58:16,745 SO THERE'S A LOT OF DESCRIPTION 3777 02:58:16,745 --> 02:58:17,612 FOR ROP. 3778 02:58:17,612 --> 02:58:24,586 LESS WHEN YOU TALK ABOUT CVI. 3779 02:58:24,586 --> 02:58:28,857 AND ONE STUDY WAS EARLY 3780 02:58:28,857 --> 02:58:33,561 TREATMENT OF ROP STUDY WHICH HAD 3781 02:58:33,561 --> 02:58:34,429 342 ROP CHILDREN. 3782 02:58:34,429 --> 02:58:37,532 THANE SUBSET THEY LOOKED AT 3783 02:58:37,532 --> 02:58:40,869 CHILDREN WHO HAD SEVERE VISUAL 3784 02:58:40,869 --> 02:58:43,405 IMPAIRMENT AND SUBSET INCLUDES 3785 02:58:43,405 --> 02:58:45,674 64 IN THE GROUP AND HAD SIX 3786 02:58:45,674 --> 02:58:48,009 YEARS OF FOLLOW-UP TO SAY THEY 3787 02:58:48,009 --> 02:58:48,977 HAD SEVERE VISUAL IMPAIRMENT AND 3788 02:58:48,977 --> 02:58:51,312 HOW MANY WERE ASSOCIATED WITH 3789 02:58:51,312 --> 02:58:51,880 THE CVI DIAGNOSIS. 3790 02:58:51,880 --> 02:58:54,015 THERE'S ISSUES WITH THE STUDY IN 3791 02:58:54,015 --> 02:58:56,384 TERMS OF WHAT WOULD WERE THE 3792 02:58:56,384 --> 02:58:58,453 DIAGNOSTIC CRITERIA BUT IN THAT 3793 02:58:58,453 --> 02:59:02,123 GROUP THEY ONLY NOTICED 7% AT 3794 02:59:02,123 --> 02:59:03,858 CVI IN TERMS OF THE ROP 3795 02:59:03,858 --> 02:59:06,428 PATIENTS. 3796 02:59:06,428 --> 02:59:12,667 SO OTHER FINDINGS IN THE RETINA 3797 02:59:12,667 --> 02:59:14,602 WE WANTED TO TALK ABOUT 3798 02:59:14,602 --> 02:59:16,371 NEURODEGENERATIVE FINDINGS. 3799 02:59:16,371 --> 02:59:20,141 AND THESE ARE MY PATIENTS, 3800 02:59:20,141 --> 02:59:22,911 INHERITED GENETIC DYSTROPHIES 3801 02:59:22,911 --> 02:59:24,846 CAN OCCUR IN THIS GROUP AND 3802 02:59:24,846 --> 02:59:26,915 MACULAR DYSTROPHY. 3803 02:59:26,915 --> 02:59:30,852 THIS IS TOXICITY. 3804 02:59:30,852 --> 02:59:36,391 IN UTERO DRUG EXPOSURE AND WHERE 3805 02:59:36,391 --> 02:59:41,062 THE MACULAR WOULD BE AND WE CALL 3806 02:59:41,062 --> 02:59:47,802 THAT MACULAR COLOBOMA AND THIS 3807 02:59:47,802 --> 02:59:53,608 IS RETINITIS PIGMENTOSA AND YOU 3808 02:59:53,608 --> 03:00:01,182 CAN SEE THERE'S AND WE CAN 3809 03:00:01,182 --> 03:00:04,119 IMABLE THE RETINA AND SEE THIS 3810 03:00:04,119 --> 03:00:05,620 RING WHICH TELLS US THERE'S 3811 03:00:05,620 --> 03:00:08,156 DAMAGE MORE SO ON THE PERIPHERY 3812 03:00:08,156 --> 03:00:11,226 OF THE RETINA VERSUS WHAT'S 3813 03:00:11,226 --> 03:00:13,661 BEING SPARED AT THE MACULA. 3814 03:00:13,661 --> 03:00:13,895 . 3815 03:00:13,895 --> 03:00:15,497 AND WE TALKED ABOUT THE 3816 03:00:15,497 --> 03:00:17,599 CHILDREN, 50% TO 70% DEPENDING 3817 03:00:17,599 --> 03:00:19,868 ON THE STUDIES HAVE SESURE 3818 03:00:19,868 --> 03:00:20,168 HISTORY. 3819 03:00:20,168 --> 03:00:23,638 MANY ARE ON MEDICATIONS FOR 3820 03:00:23,638 --> 03:00:24,839 MULTIPLE MEDICATIONS AND THIS IS 3821 03:00:24,839 --> 03:00:30,278 A PICTURE OF A CHILD ON MULTIPLE 3822 03:00:30,278 --> 03:00:32,747 SEIZURE MEDICATIONS AND IN 3823 03:00:32,747 --> 03:00:36,417 PARTICULAR YOU CAN SEE THERE'S A 3824 03:00:36,417 --> 03:00:39,454 SIGNIFICANT AMOUNT OF PERIPHERAL 3825 03:00:39,454 --> 03:00:39,954 RETINAL DEGENERATION. 3826 03:00:39,954 --> 03:00:41,589 SOMETIMES WE CAN SEE THE RETINAL 3827 03:00:41,589 --> 03:00:47,796 FINDINGS IN OUR CHILDREN. 3828 03:00:47,796 --> 03:00:49,030 I'LL TALK A LITTLE BIT ABOUT 3829 03:00:49,030 --> 03:00:50,565 RETINA AND OPTIC NERVE 3830 03:00:50,565 --> 03:00:51,232 DEVELOPMENT. 3831 03:00:51,232 --> 03:00:53,635 THIS IS A PICTURE SHOWING EARLY 3832 03:00:53,635 --> 03:00:55,370 AND FIRST TRIMESTER TALKING 3833 03:00:55,370 --> 03:00:57,305 ABOUT THE DEVELOPMENT OF THE 3834 03:00:57,305 --> 03:00:59,340 VISUAL SYSTEM. 3835 03:00:59,340 --> 03:01:03,411 YOU HAVE THIS OPTIC VESSEL AND 3836 03:01:03,411 --> 03:01:06,748 THERE'S A CLOSURE OF THE FISSURE 3837 03:01:06,748 --> 03:01:07,315 RIGHT HERE. 3838 03:01:07,315 --> 03:01:12,420 THIS IS THE OPTIC STALK AND THIS 3839 03:01:12,420 --> 03:01:14,856 WOULD BE THE EYE DEVELOPING AND 3840 03:01:14,856 --> 03:01:17,392 THIS FISSURE WHICH CLOSES AND 3841 03:01:17,392 --> 03:01:23,398 WHEN IT CLOSES IT CLOSES 3842 03:01:23,398 --> 03:01:25,800 INTRANASALLY AND GET DEFICITS 3843 03:01:25,800 --> 03:01:28,703 WITHIN THE OPTIC NERVE AND CAN 3844 03:01:28,703 --> 03:01:32,974 MOVE TO THE FRONT PART AND EYES 3845 03:01:32,974 --> 03:01:36,244 DIVING IN THE ANTERIOR AND 3846 03:01:36,244 --> 03:01:37,078 POSTERIOR SEGMENT. 3847 03:01:37,078 --> 03:01:40,114 THIS COULD HAPPEN WITH ISSUES OF 3848 03:01:40,114 --> 03:01:41,616 MALDEVELOPMENT AND TALKED ABOUT 3849 03:01:41,616 --> 03:01:46,087 A COUPLE IN TERMS OF IN UTERO 3850 03:01:46,087 --> 03:01:52,493 DRUG EXPOSURE AND ANY GENETIC OR 3851 03:01:52,493 --> 03:01:54,028 CHROMOSOME ABNORMALITIES WHICH 3852 03:01:54,028 --> 03:02:00,635 MAY CAUSE ABNORMALITY OF THE EYE 3853 03:02:00,635 --> 03:02:04,839 AND THIS IS AN OPTIC NERVE. 3854 03:02:04,839 --> 03:02:10,879 THE INFERIOR NASAL ASPECT 3855 03:02:10,879 --> 03:02:11,412 INCOMPLETE CALENDAR AND 3856 03:02:11,412 --> 03:02:13,348 SOMETIMES IT INVOLVES THE OPTIC 3857 03:02:13,348 --> 03:02:17,619 NERVE AS IN THIS CASE DOWN HERE 3858 03:02:17,619 --> 03:02:25,660 AND YOU HAVE THE COLOMBOMA AND 3859 03:02:25,660 --> 03:02:28,863 YOU CAN LEAD TO RETINAL DET 3860 03:02:28,863 --> 03:02:29,497 DETACH 3861 03:02:29,497 --> 03:02:31,799 DETACHMENTS. 3862 03:02:31,799 --> 03:02:35,837 THE MOST COMMON OPTIC NERVE 3863 03:02:35,837 --> 03:02:40,241 FINDING ABNORMALITY FINDING IS 3864 03:02:40,241 --> 03:02:44,646 OPTIC NERVE HYPOPLASIA. 3865 03:02:44,646 --> 03:02:46,915 IT'S THOUGHT TO HAPPEN IN THE 3866 03:02:46,915 --> 03:02:47,615 FIRST TRIMESTER. 3867 03:02:47,615 --> 03:02:52,553 THE PICTURE I SHOWED BEFORE 3868 03:02:52,553 --> 03:02:54,055 THEY'RE SENDING AXONS AND IF 3869 03:02:54,055 --> 03:02:58,660 THERE'S AN ISSUE IN THEIR 3870 03:02:58,660 --> 03:03:03,298 MIGRATION AND A LACK OF RETINAL 3871 03:03:03,298 --> 03:03:05,133 GANGLION CELLS THE NERVE IS 3872 03:03:05,133 --> 03:03:05,366 SMALLER. 3873 03:03:05,366 --> 03:03:07,602 YOU HAVE THIS SMALLER OPTIC 3874 03:03:07,602 --> 03:03:09,170 NERVE, YOU CAN SEE THAT HERE AND 3875 03:03:09,170 --> 03:03:14,309 YOU CAN MAKE OUT THE YOIT LINE 3876 03:03:14,309 --> 03:03:19,347 THE RING AROUND THIS IN TERMS OF 3877 03:03:19,347 --> 03:03:24,285 THE SCLERA WHERE THE OPTIC NERVE 3878 03:03:24,285 --> 03:03:25,720 WOULD HAVE BEEN IF IT MADE THE 3879 03:03:25,720 --> 03:03:26,821 MIGRATION. 3880 03:03:26,821 --> 03:03:29,924 THIS IS ASSOCIATED WITH IN UTERO 3881 03:03:29,924 --> 03:03:30,558 DRUG EXPOSURE AND OTHER ISSUES 3882 03:03:30,558 --> 03:03:37,031 AS WELL. 3883 03:03:37,031 --> 03:03:40,668 ONE WE TALKED ABOUT. 3884 03:03:40,668 --> 03:03:43,404 THE STUDIES HAVE SHOWN 16% TO 3885 03:03:43,404 --> 03:03:46,874 42% HAVE AN OPTIC NERVE POWER 3886 03:03:46,874 --> 03:03:47,141 ATROPHY. 3887 03:03:47,141 --> 03:03:48,276 I'LL MAKE SEVERAL POINTS USING 3888 03:03:48,276 --> 03:03:50,511 THE SAME FOUR PICTURES. 3889 03:03:50,511 --> 03:03:53,848 IT'S THE MORPHOLOGICAL SEQUELAE 3890 03:03:53,848 --> 03:03:59,387 OF INSULTS THAT IMPACT THE BASAL 3891 03:03:59,387 --> 03:04:05,860 GANGLION CELLS AND AXONS AND 3892 03:04:05,860 --> 03:04:09,430 THINNING OF THE NEURAL TISSUE 3893 03:04:09,430 --> 03:04:09,831 AND ARCHITECTURE. 3894 03:04:09,831 --> 03:04:15,269 THE CHANGE IN WHAT IS NOTED IN 3895 03:04:15,269 --> 03:04:19,440 THE TISSUE. 3896 03:04:19,440 --> 03:04:21,342 PALLOR CAN BE SEEN IN LOCATION 3897 03:04:21,342 --> 03:04:25,780 OR THE DEGREE YOU SEE AND YOU 3898 03:04:25,780 --> 03:04:29,717 MAY HEAR PEOPLE SAY ONE POWER 3899 03:04:29,717 --> 03:04:32,653 AND FOUR POWER AND THE MORE 3900 03:04:32,653 --> 03:04:35,323 POWER THE THOUGHT OF LESS 3901 03:04:35,323 --> 03:04:37,658 GANGLION CELLS AND YOU CAN SEE 3902 03:04:37,658 --> 03:04:42,230 THIS IS JUST FROM THE LEFT EYE 3903 03:04:42,230 --> 03:04:47,635 AND AND YOU SEE THE AND YOU SEE 3904 03:04:47,635 --> 03:04:49,537 THE DIFFUSED POWER AROUND THE 3905 03:04:49,537 --> 03:04:49,971 OPTIC NERVE. 3906 03:04:49,971 --> 03:04:52,807 GREATER LOSS OF AXONS IN THIS 3907 03:04:52,807 --> 03:05:02,216 DIFFUSED VERSUS THE PALLOR POWER 3908 03:05:02,216 --> 03:05:05,386 AND THIS IS AN EXAMPLE HERE. 3909 03:05:05,386 --> 03:05:08,089 THIS IS THIS NERVE. 3910 03:05:08,089 --> 03:05:10,758 SOMETHING HAPPENED TO THIS NERVE 3911 03:05:10,758 --> 03:05:13,661 THAT CAUSED IT TO BE 3912 03:05:13,661 --> 03:05:16,597 HEMORRHAGING AND INFLAMED AND 3913 03:05:16,597 --> 03:05:19,567 DEVELOPED INTO THE LOSS. 3914 03:05:19,567 --> 03:05:24,705 CONGENITAL SOMETHING ALONG THE 3915 03:05:24,705 --> 03:05:30,845 DEVELOPMENT CAUSED THE CELLS TO 3916 03:05:30,845 --> 03:05:33,648 BE SYMMETRIC. 3917 03:05:33,648 --> 03:05:34,649 AND INTERESTINGLY WE FIND OUT 3918 03:05:34,649 --> 03:05:36,150 THE COLOR VISION IS SPARED SO 3919 03:05:36,150 --> 03:05:37,085 OUT OF PROPORTION WITH THE 3920 03:05:37,085 --> 03:05:41,289 DEGREE OF POWER. 3921 03:05:41,289 --> 03:05:44,459 ANOTHER WAY TO THINK OF IT THAT 3922 03:05:44,459 --> 03:05:46,127 COMES UP COMMONLY IN CVI IN 3923 03:05:46,127 --> 03:05:49,964 TERMS OF WHERE THE ETIOLOGY 3924 03:05:49,964 --> 03:05:53,668 AFFECTED THE LOSS OF THE RETINAL 3925 03:05:53,668 --> 03:05:55,603 GANGLION CELLS AND SOMETHING 3926 03:05:55,603 --> 03:06:01,676 MORE ANTERIOR OR POST ANTERIOR 3927 03:06:01,676 --> 03:06:06,080 AND TRANSSYNAPTIC DEGENERATION 3928 03:06:06,080 --> 03:06:08,783 AND TRAUMA THAT HAPPENED IN 3929 03:06:08,783 --> 03:06:11,619 FRONT OF THE EYE AND WE SEE 3930 03:06:11,619 --> 03:06:12,720 DEGENERATION AND AFFECTING AND 3931 03:06:12,720 --> 03:06:17,091 WHERE WE GET THE OPTIC NERVE 3932 03:06:17,091 --> 03:06:17,458 POWER. 3933 03:06:17,458 --> 03:06:22,730 IN CVI THERE'S POSTERIOR 3934 03:06:22,730 --> 03:06:25,666 INVOLVEMENT AND IT'S THE LACK OF 3935 03:06:25,666 --> 03:06:28,769 INFORMATION THAT COMES BACK TO 3936 03:06:28,769 --> 03:06:31,372 THE RETINAL GANGLION CELLS THAT 3937 03:06:31,372 --> 03:06:38,913 IS THE CAUSE OF THE POWER. 3938 03:06:38,913 --> 03:06:40,214 >> ONE MINUTE. 3939 03:06:40,214 --> 03:06:40,781 >> OKAY. 3940 03:06:40,781 --> 03:06:41,149 THAT'S FAST. 3941 03:06:41,149 --> 03:06:44,118 I CAN'T DO THAT IN ONE MINUTE. 3942 03:06:44,118 --> 03:06:47,088 I'LL NEED TWO. 3943 03:06:47,088 --> 03:06:50,758 OPTIC NERVE HYPOPLASIA LEADS TO 3944 03:06:50,758 --> 03:06:52,927 OPTIC FIELD IMPACT AND CAN 3945 03:06:52,927 --> 03:06:55,496 IMPACT THE OVER ALL VISUAL 3946 03:06:55,496 --> 03:06:57,632 FUNCTION ASSESSMENT AND CAN 3947 03:06:57,632 --> 03:07:01,936 ELUCIDATE VISUAL PREFERENCES AND 3948 03:07:01,936 --> 03:07:03,437 UNDERSTANDING THE VISUAL FIELDS 3949 03:07:03,437 --> 03:07:04,272 CAN BE A KEY. 3950 03:07:04,272 --> 03:07:08,843 I WANT TO TALK ABOUT THE OCULAR 3951 03:07:08,843 --> 03:07:09,343 DYSMOTILITY STRABISMUS. 3952 03:07:09,343 --> 03:07:11,612 I'LL MOVE FAST. 3953 03:07:11,612 --> 03:07:14,182 THIS -- I LOVE THIS VIDEO 3954 03:07:14,182 --> 03:07:16,651 BECAUSE IT SHOWS ASPECTS-WE KNOW 3955 03:07:16,651 --> 03:07:19,220 IN CVI PATIENTS IT'S FROM 11% TO 3956 03:07:19,220 --> 03:07:24,559 22% DEPENDING ON YOUR STUDY THIS 3957 03:07:24,559 --> 03:07:27,862 CHILD HAS VERTICAL NYSTAGMUS AND 3958 03:07:27,862 --> 03:07:33,668 THERE'S QUICK PSYCHOTIC 3959 03:07:33,668 --> 03:07:40,374 INTRUSIONS AND THERE'S NIS AND 3960 03:07:40,374 --> 03:07:43,144 LOOKING AT PROXIMAL DEVIATIONS 3961 03:07:43,144 --> 03:07:44,779 AND ALSO SHOWN IN THE EXAMPLE. 3962 03:07:44,779 --> 03:07:46,447 I'LL PASS THIS SLIDE BUT THIS IS 3963 03:07:46,447 --> 03:07:50,084 STALKING ABOUT DIFFERENT EYE 3964 03:07:50,084 --> 03:08:00,628 HOMES INTRUSIONS AND WE SEE THIS 3965 03:08:00,928 --> 03:08:03,231 IN TWO TO FOUR MONTHS IN 3966 03:08:03,231 --> 03:08:07,368 CHILDREN AND COULD BE IDIOPATHIC 3967 03:08:07,368 --> 03:08:08,836 AND THE THOUGHT IS THERE'S OPTIC 3968 03:08:08,836 --> 03:08:13,608 NERVE FINDINGS OR DUE TO RETINA 3969 03:08:13,608 --> 03:08:17,178 AND OPTIC NERVE ISSUES. 3970 03:08:17,178 --> 03:08:18,112 IT'S HORIZONTAL AND YOU CAN SEE 3971 03:08:18,112 --> 03:08:23,317 THERE WAS A HEAD POSITION. 3972 03:08:23,317 --> 03:08:24,452 THAT'S IMPORTANT WHEN YOU THINK 3973 03:08:24,452 --> 03:08:25,786 OF HEAD PREFERENCES AND WHERE 3974 03:08:25,786 --> 03:08:29,624 THEY'RE FIXATING. 3975 03:08:29,624 --> 03:08:34,161 THIS OCULAR MOTOR APRAXIA AND 3976 03:08:34,161 --> 03:08:38,966 THOUGHT TO BE DUE TO PERFORMANCE 3977 03:08:38,966 --> 03:08:42,803 OF UNABLE TO FIXATE ON TARGET 3978 03:08:42,803 --> 03:08:44,605 YOU SEE THE HEAD THRUST AND 3979 03:08:44,605 --> 03:08:49,176 THOUGHT TO IMPROVE WITH 3980 03:08:49,176 --> 03:08:51,345 DEVELOPMENT. 3981 03:08:51,345 --> 03:08:57,585 STRABISMUS WAS TO HEAR THE 3982 03:08:57,585 --> 03:08:59,153 DISCUSSION AND EYE CROSSING IN 3983 03:08:59,153 --> 03:09:04,692 AND OUT AND STRABISMUS IS 3984 03:09:04,692 --> 03:09:04,925 COMMON. 3985 03:09:04,925 --> 03:09:12,900 YOU CAN HAVE DISKINETIC 3986 03:09:12,900 --> 03:09:17,505 MOVEMENTS AND ESOTROPIA AND EYES 3987 03:09:17,505 --> 03:09:20,441 CROSSING IN AND INSTANTANEOUSLY 3988 03:09:20,441 --> 03:09:23,244 THE EYE GOES OUT AND BACK IN. 3989 03:09:23,244 --> 03:09:25,579 IT'S A COMPLICATED WHEN YOU 3990 03:09:25,579 --> 03:09:26,681 THINK OF FIXING THE MISALIGN 3991 03:09:26,681 --> 03:09:34,955 MANY. 3992 03:09:34,955 --> 03:09:36,490 WE WANT TO FOLLOW THE CHILDREN 3993 03:09:36,490 --> 03:09:37,925 CLOSELY AND ONCE YOU HAVE A 3994 03:09:37,925 --> 03:09:45,666 STABLE DEVIATION THE TIME TO 3995 03:09:45,666 --> 03:09:47,668 MAKE SURGICAL CORRECTION. 3996 03:09:47,668 --> 03:09:49,570 >> YOU NEED TO WRAP UP. 3997 03:09:49,570 --> 03:09:53,574 >> I HAVE THREE MORE SLIDES. 3998 03:09:53,574 --> 03:09:58,579 REFRACTIVE ERROR EXISTS AND IS 3999 03:09:58,579 --> 03:10:00,348 SIGNIFICANT WITHIN OUR CVI 4000 03:10:00,348 --> 03:10:05,119 POPULATION 79% IN SOME OF THE 4001 03:10:05,119 --> 03:10:05,353 STUDIES. 4002 03:10:05,353 --> 03:10:09,023 THE MOST COMMON IS COMPOUND 4003 03:10:09,023 --> 03:10:11,359 MYOPIC ASTIGMATISM AND TREAT THE 4004 03:10:11,359 --> 03:10:11,625 RETRACTOR. 4005 03:10:11,625 --> 03:10:13,294 A STUDY SHOWED PEOPLE WITH 4006 03:10:13,294 --> 03:10:14,462 SEVERE CVI LOW VISION FUNCTION 4007 03:10:14,462 --> 03:10:17,398 AND SIGNIFICANT REFRACTORY ERROR 4008 03:10:17,398 --> 03:10:19,467 WERE COMMONLY NOT PRESCRIBED 4009 03:10:19,467 --> 03:10:24,372 GLASSES SO PLEASE PRESCRIBE YOUR 4010 03:10:24,372 --> 03:10:24,638 GLASSES. 4011 03:10:24,638 --> 03:10:28,008 SO THIS LAST SECTION IS 4012 03:10:28,008 --> 03:10:29,510 CONGENITAL OCULAR ABNORMALITIES. 4013 03:10:29,510 --> 03:10:32,346 TWO STUDIES I'D LIKE TO POINT. 4014 03:10:32,346 --> 03:10:37,218 A STUDY OF GREAT REVIEW DONE BY 4015 03:10:37,218 --> 03:10:41,622 DR. CHANG AND THEY LOOKED AT 4016 03:10:41,622 --> 03:10:43,391 WHAT SYNDROMES WERE ASSOCIATED 4017 03:10:43,391 --> 03:10:44,992 WITH CVI AND THIS IS A GREAT 4018 03:10:44,992 --> 03:10:45,493 LIST. 4019 03:10:45,493 --> 03:10:47,895 THIS IS A STUDY WE DID IN WHICH 4020 03:10:47,895 --> 03:10:51,065 WE LOOKED RETROSPECTIVELY AT 265 4021 03:10:51,065 --> 03:10:53,033 KIDS AND WHAT THEIR 4022 03:10:53,033 --> 03:10:53,667 NEUROGENETICS WAS IN THEIR 4023 03:10:53,667 --> 03:10:55,803 ASSESSMENT AND WERE ABLE TO 4024 03:10:55,803 --> 03:10:57,004 IDENTIFY GENES THAT WERE NOT 4025 03:10:57,004 --> 03:10:57,204 KNOWN. 4026 03:10:57,204 --> 03:10:59,540 THIS MIGHT BE A STEPPING STONE 4027 03:10:59,540 --> 03:11:03,444 FOR THINKING ABOUT GENES AND 4028 03:11:03,444 --> 03:11:04,445 THEIR ASSOCIATED OCULAR FINDINGS 4029 03:11:04,445 --> 03:11:10,117 IN OUR CLINICS. 4030 03:11:10,117 --> 03:11:12,987 THIS LAST SLIDE IS CVI WITH 4031 03:11:12,987 --> 03:11:15,423 METABOLIC AND GENETIC DISORDERS 4032 03:11:15,423 --> 03:11:17,124 THAT ALSO HAD OCULAR 4033 03:11:17,124 --> 03:11:17,625 COMORBIDITIES. 4034 03:11:17,625 --> 03:11:20,761 YOU CAN HAVE INTERIOR SEGMENT 4035 03:11:20,761 --> 03:11:26,434 ISSUES AND DYSGENESIS AND I HAD 4036 03:11:26,434 --> 03:11:27,435 THE OPPORTUNITY TO TAKE CARE OF 4037 03:11:27,435 --> 03:11:33,641 A GROUP OF KIDS WITH THE FNR21 4038 03:11:33,641 --> 03:11:37,111 KIDS AN ATROPHY SYNDROME. 4039 03:11:37,111 --> 03:11:40,047 THEY HAD IC NERVE ISSUES AND DID 4040 03:11:40,047 --> 03:11:45,586 A STUDY AND LOOKED AT THEIR MRIs 4041 03:11:45,586 --> 03:11:56,063 AND 18 OF 21 FOUND MESSIAL 4042 03:11:58,299 --> 03:12:08,576 TEMPORAL DYS-GYRIA. 4043 03:12:08,943 --> 03:12:12,980 AND MOST OF THE CVI AND OCULAR 4044 03:12:12,980 --> 03:12:15,115 ABNORMALITIES ARE TREATABLE 4045 03:12:15,115 --> 03:12:17,618 REFRACTIVE ERROR AND 4046 03:12:17,618 --> 03:12:19,753 ACCOMMODATIVE DEFICIENCY AND 4047 03:12:19,753 --> 03:12:20,888 NYSTAGMUS AND STRABISMUS. 4048 03:12:20,888 --> 03:12:22,323 I APPRECIATE THE EXTRA TIME. 4049 03:12:22,323 --> 03:12:23,824 >> THERE'S NO TIME FOR PANEL 4050 03:12:23,824 --> 03:12:27,094 QUESTIONS BUT FEEL FREE TO ASK 4051 03:12:27,094 --> 03:12:27,828 THE PREVIOUS THREE SPEAKERS 4052 03:12:27,828 --> 03:12:33,300 QUESTIONS DURING THE BREAK. 4053 03:12:33,300 --> 03:12:35,102 >> THANK YOU. 4054 03:12:35,102 --> 03:12:36,570 WE'RE IN SECTION 2, VISUAL 4055 03:12:36,570 --> 03:12:38,672 FUNCTION AND FUNCTIONAL VISION. 4056 03:12:38,672 --> 03:12:45,312 THE NEXT SPEAKER IS DR. BAUER AT 4057 03:12:45,312 --> 03:12:46,780 THE GORDON CENTER FOR MEDICAL 4058 03:12:46,780 --> 03:12:48,849 IMAGING DEPARTMENT OF RADIOLOGY 4059 03:12:48,849 --> 03:12:52,353 AND THE DEPARTMENT OF 4060 03:12:52,353 --> 03:12:53,921 OPHTHALMOLOGY AT HARVARD MEDICAL 4061 03:12:53,921 --> 03:12:55,422 SCHOOL AND MASSACHUSETTS GENERAL 4062 03:12:55,422 --> 03:12:55,689 HOSPITAL. 4063 03:12:55,689 --> 03:12:58,092 SHE WAS A FORMER FELLOW AND 4064 03:12:58,092 --> 03:12:59,860 HAPPY AND PROUD SHE NOW LEADS 4065 03:12:59,860 --> 03:13:02,263 HER OWN INDEPENDENT LINE OF 4066 03:13:02,263 --> 03:13:02,530 RESEARCH. 4067 03:13:02,530 --> 03:13:05,032 >> FIRST, THANK YOU FOR THE 4068 03:13:05,032 --> 03:13:05,266 INVITE. 4069 03:13:05,266 --> 03:13:09,670 IT'S A HUGE HONOR TO BE HERE 4070 03:13:09,670 --> 03:13:17,611 AMONGST ALL OF YOU EXPERTS. 4071 03:13:17,611 --> 03:13:23,617 SO THANKS ALSO TO THE OTHERS 4072 03:13:23,617 --> 03:13:25,252 SUMMARIZING MY SLIDES. 4073 03:13:25,252 --> 03:13:27,321 MY FIRST THREE SLIDES HAVE BEEN 4074 03:13:27,321 --> 03:13:31,492 TALKED ABOUT BUT NOT JUST 4075 03:13:31,492 --> 03:13:33,661 CHALLENGING WITH VISUAL FUNCTION 4076 03:13:33,661 --> 03:13:37,364 AND FUNCTIONAL VISION WHICH CAN 4077 03:13:37,364 --> 03:13:38,832 BE HETEROGENOUS WITH OTHER 4078 03:13:38,832 --> 03:13:43,938 VISUAL PROCESSES STARTING TO BE 4079 03:13:43,938 --> 03:13:45,072 MORE RECOGNIZED. 4080 03:13:45,072 --> 03:13:47,074 SO WE HAVE HETEROGENOUS 4081 03:13:47,074 --> 03:13:47,908 PRESENTATIONS IN MATERIALS OF 4082 03:13:47,908 --> 03:13:51,245 THE LEVEL OF VISUAL ABILITIES. 4083 03:13:51,245 --> 03:13:51,845 AS WELL AS HETEROGENEITY IN 4084 03:13:51,845 --> 03:13:52,880 TERMS OF WHAT THE BRAINS LOOK 4085 03:13:52,880 --> 03:13:58,319 LIKE CLINICALLY. 4086 03:13:58,319 --> 03:14:01,689 BEFORE I FORGET I'M A TALL 4087 03:14:01,689 --> 03:14:03,123 SKINNY CAUCASIAN FEMALE WITH 4088 03:14:03,123 --> 03:14:06,126 MEDIUM LENGTH BROWN HAIR. 4089 03:14:06,126 --> 03:14:12,433 SO HERE WE HAVE BRAIN SLICES 4090 03:14:12,433 --> 03:14:13,667 FROM FIVE INDIVIDUALS FROM CVI 4091 03:14:13,667 --> 03:14:18,739 AND THEY SHOW A RANGE OF OBVIOUS 4092 03:14:18,739 --> 03:14:20,841 BRAIN ABNORMALITIES. 4093 03:14:20,841 --> 03:14:23,477 THE ONE ON THE -- HOW DO I DO 4094 03:14:23,477 --> 03:14:23,677 THIS? 4095 03:14:23,677 --> 03:14:28,949 THE ONE ON THE LEFT AND RIGHT 4096 03:14:28,949 --> 03:14:34,855 ARE OBVIOUSLY DAMAGED AND HAVE 4097 03:14:34,855 --> 03:14:35,789 OBJECTION INJURY WHERE THE 4098 03:14:35,789 --> 03:14:37,124 OTHERS ARE MORE SUBTLE. 4099 03:14:37,124 --> 03:14:39,493 I THINK THAT'S IMPORTANT TO 4100 03:14:39,493 --> 03:14:43,230 RECOGNIZE THAT NOT ONLY IS A NUL 4101 03:14:43,230 --> 03:14:46,700 MRI NOT EXCLUSIVE OF A DIAGNOSIS 4102 03:14:46,700 --> 03:14:47,301 OF CVI BUT IT'S AN IMPORTANT 4103 03:14:47,301 --> 03:14:49,203 POINT. 4104 03:14:49,203 --> 03:14:52,239 SO ONE THING I MENTIONED EARLIER 4105 03:14:52,239 --> 03:14:53,641 WAS THE GRADING SCALE. 4106 03:14:53,641 --> 03:14:57,911 THIS IS AN EXAMPLE FROM OUR LAB. 4107 03:14:57,911 --> 03:15:01,248 IT HAPPENS TO BE ON THE RIGHT WE 4108 03:15:01,248 --> 03:15:03,050 HAVE QUANTITATIVE LESION 4109 03:15:03,050 --> 03:15:03,517 MAPPING. 4110 03:15:03,517 --> 03:15:05,986 WE CAN GO THROUGH AN MINIMALLY 4111 03:15:05,986 --> 03:15:08,989 TRACE DELETIONS OR USE AUTOMATED 4112 03:15:08,989 --> 03:15:09,490 APPROACHES. 4113 03:15:09,490 --> 03:15:11,291 FROM THAT, WE CAN THEN LOOK AT 4114 03:15:11,291 --> 03:15:12,159 THE DISTRIBUTION OF THE LESION 4115 03:15:12,159 --> 03:15:14,662 OF VOLUMES OF OUR PARTICIPANTS 4116 03:15:14,662 --> 03:15:18,365 WITH CVI AND SEE SOME HAVE LIKE 4117 03:15:18,365 --> 03:15:20,901 PRETTY LARGE AND EXTENSIVE WHITE 4118 03:15:20,901 --> 03:15:22,970 MATTER INJURIES AND OTHERS DO 4119 03:15:22,970 --> 03:15:27,341 NOT HAVE ANY OBVIOUS WHITE 4120 03:15:27,341 --> 03:15:29,076 MATTER DAMAGE. 4121 03:15:29,076 --> 03:15:32,012 NOT HAVING WHITE MATTER DAMAGE 4122 03:15:32,012 --> 03:15:33,547 MEANS YOU DON'T HAVE VISIBLE 4123 03:15:33,547 --> 03:15:34,648 WHITE MATTER DAMAGE WITH THE 4124 03:15:34,648 --> 03:15:36,250 FLARE SCAN IT DOESN'T MEAN IT'S 4125 03:15:36,250 --> 03:15:38,652 NOT IMPACTED BY DIFFUSION OR 4126 03:15:38,652 --> 03:15:39,186 SOMETHING LIKE THAT. 4127 03:15:39,186 --> 03:15:44,258 WHAT'S THE RELATIONSHIP THEN 4128 03:15:44,258 --> 03:15:45,559 BETWEEN THE SCANS AND VISUAL 4129 03:15:45,559 --> 03:15:46,960 PERCEPTION AND ABILITIES? 4130 03:15:46,960 --> 03:15:49,430 SO THERE'S BEEN A COUPLE OF 4131 03:15:49,430 --> 03:15:50,531 STUDIES OVER THE YEARS THAT HAVE 4132 03:15:50,531 --> 03:15:51,632 DONE THIS. 4133 03:15:51,632 --> 03:15:56,637 ONE WAS BACK IN 96 AND RECENTLY 4134 03:15:56,637 --> 03:15:57,671 WITH COLLEAGUES. 4135 03:15:57,671 --> 03:15:59,707 WE WANTED TO BE MORE 4136 03:15:59,707 --> 03:16:01,208 QUANTITATIVE AS GLEN MENTIONED 4137 03:16:01,208 --> 03:16:04,244 JUST SCIENTISTS AND MEASURE 4138 03:16:04,244 --> 03:16:04,878 THINGS. 4139 03:16:04,878 --> 03:16:07,314 WE DECIDED TO LOOK AT VOLUME OF 4140 03:16:07,314 --> 03:16:10,217 SPECIFIC AREAS IN THE CORTEX THE 4141 03:16:10,217 --> 03:16:10,951 OUTER SHEATH OF GRAY MATTER 4142 03:16:10,951 --> 03:16:13,954 AROUND THE BRAIN AND RELATED 4143 03:16:13,954 --> 03:16:16,156 THAT TO MEASURES OF CVI 4144 03:16:16,156 --> 03:16:16,423 QUESTION. 4145 03:16:16,423 --> 03:16:19,293 SO WE LOOKED GLOBALLY AT THE 4146 03:16:19,293 --> 03:16:21,662 TOTAL NUMBER OF REPORTED 4147 03:16:21,662 --> 03:16:24,698 DIFFICULTIES ON THAT CVI 4148 03:16:24,698 --> 03:16:27,234 QUESTIONNAIRE AND THE INTERIOR 4149 03:16:27,234 --> 03:16:28,235 SINGULAR CAME OUT AS BEING 4150 03:16:28,235 --> 03:16:29,636 SIGNIFICANTLY CORRELATED. 4151 03:16:29,636 --> 03:16:32,706 THESE ARE ALL THE CORRELATIONS 4152 03:16:32,706 --> 03:16:34,508 ARE PARTIAL CORRELATIONS SXRFTED 4153 03:16:34,508 --> 03:16:36,110 FOR AGE AND VISUAL. 4154 03:16:36,110 --> 03:16:38,846 AND WHEN WE GO THROUGH AND LOOK 4155 03:16:38,846 --> 03:16:40,114 AT THE SPECIFIC FACTOR BREAKDOWN 4156 03:16:40,114 --> 03:16:41,315 WITHIN THE QUESTIONNAIRE WE SEE 4157 03:16:41,315 --> 03:16:44,651 THREE OF THE FACTORS WERE 4158 03:16:44,651 --> 03:16:47,621 SIGNIFICANTLY CORRELATED WITH 4159 03:16:47,621 --> 03:16:49,656 SPECIFIC VOLUMES AND OBJECT AND 4160 03:16:49,656 --> 03:16:53,627 FACE PROCESSING IMPAIRMENTS 4161 03:16:53,627 --> 03:17:00,167 ASSOCIATED WITH THE GUI GYRUS 4162 03:17:00,167 --> 03:17:02,536 AND RELATED TO THE INTERIOR 4163 03:17:02,536 --> 03:17:05,205 SINGULAR CORTEX WHICH IS 4164 03:17:05,205 --> 03:17:07,875 INVOLVED IN NETWORKS AND 4165 03:17:07,875 --> 03:17:09,610 ANXIETY-RELATED BEHAVIORS WERE 4166 03:17:09,610 --> 03:17:10,244 RELATED TO PRIMARY VISUAL CORE 4167 03:17:10,244 --> 03:17:16,416 VOLUME . 4168 03:17:16,416 --> 03:17:18,285 I'M INTERESTED IN THE THALAMUS 4169 03:17:18,285 --> 03:17:20,053 IT'S IMPORTANT FOR MODULATING 4170 03:17:20,053 --> 03:17:21,021 THE VISUAL INFORMATION THAT 4171 03:17:21,021 --> 03:17:21,655 COMES INTO THE BRAIN SO WE CAN 4172 03:17:21,655 --> 03:17:23,924 ACT ON IT. 4173 03:17:23,924 --> 03:17:27,694 FOR THOSE WHO DON'T KNOW WHAT 4174 03:17:27,694 --> 03:17:29,563 THE THALAMUS IS IT'S SMACK IN 4175 03:17:29,563 --> 03:17:30,230 THE MIDDLE OF THE BRAIN. 4176 03:17:30,230 --> 03:17:31,865 ON THE LEFT IS EXCITED AND TWO 4177 03:17:31,865 --> 03:17:35,636 INDIVIDUALS WITH CVI IN THE 4178 03:17:35,636 --> 03:17:40,140 MIDDLE AND I'VE HIGHLIGHTED THE 4179 03:17:40,140 --> 03:17:42,109 THALAMUS IN YELLOW. 4180 03:17:42,109 --> 03:17:44,444 WHEN WE QUANTIFY THE THALAMUS AS 4181 03:17:44,444 --> 03:17:45,646 A WHOLE AND COMPARE THAT BETWEEN 4182 03:17:45,646 --> 03:17:50,751 CVI AND CONTROL GROUPS ADJUSTING 4183 03:17:50,751 --> 03:17:52,352 FOR HEAD SIZE THERE'S A 4184 03:17:52,352 --> 03:17:53,620 SIGNIFICANT REDUCTION IN THE 4185 03:17:53,620 --> 03:17:56,089 GLOBAL VOLUME OF THE THALAMUS IN 4186 03:17:56,089 --> 03:17:57,157 CVI COMPARED TO CONTROLS AND 4187 03:17:57,157 --> 03:17:59,626 NOTICE THE HETEROGENEITY. 4188 03:17:59,626 --> 03:18:02,896 IT'S NOT ALL INDIVIDUALS WITH 4189 03:18:02,896 --> 03:18:03,797 CVI BUT SOME ARE MORE IMPACTED 4190 03:18:03,797 --> 03:18:14,007 THAN OTHERS. 4191 03:18:16,710 --> 03:18:17,911 THERE WERE TWO SIGNIFICANT 4192 03:18:17,911 --> 03:18:20,414 RELATIONS I PICKED AT RANDOM. 4193 03:18:20,414 --> 03:18:25,652 OBJECT AND FACE RELATED TO THE 4194 03:18:25,652 --> 03:18:27,921 CENTRAL LATERAL THIS WILL MUSS 4195 03:18:27,921 --> 03:18:29,756 AND THE CENTRAL HUB WAS 4196 03:18:29,756 --> 03:18:31,091 ASSOCIATED WITH ATTENTION AND 4197 03:18:31,091 --> 03:18:35,429 THE MID LEVEL VISUAL PROCESSES. 4198 03:18:35,429 --> 03:18:37,664 FOR THIS REASON THERE'S AN 4199 03:18:37,664 --> 03:18:40,200 ONLINE TEST FOR LIKE A SCREEN 4200 03:18:40,200 --> 03:18:41,935 TEST FOR MID LEVEL VISION. 4201 03:18:41,935 --> 03:18:45,739 THE PERFORMANCE ON THAT TASK WAS 4202 03:18:45,739 --> 03:18:49,543 RELATED TO ANTERIOR THALAMIC 4203 03:18:49,543 --> 03:18:52,880 VOLUMES AND REDUCED VOLUMES WERE 4204 03:18:52,880 --> 03:18:53,680 ASSOCIATED WITH CHALLENGE WITH 4205 03:18:53,680 --> 03:19:02,689 MID LEVEL PROCESSES. 4206 03:19:02,689 --> 03:19:04,291 I'LL TALK ABOUT DORSAL STREAM 4207 03:19:04,291 --> 03:19:09,062 AND THEN VISUAL ATTENTION IN 4208 03:19:09,062 --> 03:19:09,463 CVI. 4209 03:19:09,463 --> 03:19:11,899 I'LL FOCUS ON PERCEPTION FOR THE 4210 03:19:11,899 --> 03:19:13,567 DORSAL STREAM AND IT'S VERY 4211 03:19:13,567 --> 03:19:17,104 COMMONLY REPORTED IN THE 4212 03:19:17,104 --> 03:19:19,239 LITERATURE TO BE CHALLENGING FOR 4213 03:19:19,239 --> 03:19:21,041 INDIVIDUALS AT RISK FOR CVI. 4214 03:19:21,041 --> 03:19:22,376 I THINK IT'S ALSO IMPORTANT TO 4215 03:19:22,376 --> 03:19:23,944 RECOGNIZE THERE ARE MULTIPLE 4216 03:19:23,944 --> 03:19:25,679 TYPES OF VISUAL MOTION 4217 03:19:25,679 --> 03:19:31,084 PERCEPTION.IT'S NOT JUST ONE 4218 03:19:31,084 --> 03:19:31,285 THING. 4219 03:19:31,285 --> 03:19:33,253 IN 2009 COLLEAGUES IN ITALY 4220 03:19:33,253 --> 03:19:34,788 LOOKED AT THREE DIFFERENT TYPE 4221 03:19:34,788 --> 03:19:37,524 OF MOTION PERCEPTION. 4222 03:19:37,524 --> 03:19:40,494 TRANSLATIONAL LEFT-RIGHT 4223 03:19:40,494 --> 03:19:42,095 CIRCULAR MOTION, AND THEN THE 4224 03:19:42,095 --> 03:19:46,133 FOURTH CATEGORY IS STATIC FORM. 4225 03:19:46,133 --> 03:19:50,470 THEY DID THIS IN KIDS WITH PBL 4226 03:19:50,470 --> 03:19:52,539 AND PRE TERMS AND BIG RISK 4227 03:19:52,539 --> 03:19:55,943 FACTORS FOR CVI AND IN CHILDREN 4228 03:19:55,943 --> 03:19:57,644 BORN AT FULL TERM. 4229 03:19:57,644 --> 03:20:01,648 THEY FOUND FOR EACH OF THE FOUR 4230 03:20:01,648 --> 03:20:06,453 DIFFERENT OUTCOME THE 4231 03:20:06,453 --> 03:20:09,022 SIGNIFICANT GROUP WITH PDL DID 4232 03:20:09,022 --> 03:20:10,590 SIGNIFICANTLY MORE POORLY ON THE 4233 03:20:10,590 --> 03:20:11,825 TASKS ON ALL OF THEM THAN 4234 03:20:11,825 --> 03:20:16,263 CONTROLS. 4235 03:20:16,263 --> 03:20:17,664 SO IN 2012 WEINSTEIN AND 4236 03:20:17,664 --> 03:20:19,199 COLLEAGUES LOOKED AT THE IMPACT 4237 03:20:19,199 --> 03:20:22,369 OF THE SPEED OF THE MOTION IN 4238 03:20:22,369 --> 03:20:24,004 INDIVIDUALS WITH CVI COMPARED TO 4239 03:20:24,004 --> 03:20:27,007 BOTH CONTROLS AND THOSE WITH 4240 03:20:27,007 --> 03:20:29,076 STRABISMUS AND SPECIFICALLY FOR 4241 03:20:29,076 --> 03:20:35,615 SLOW MOTION THE CVI GROUP WAS 4242 03:20:35,615 --> 03:20:38,585 IMPACTED AND LOOKING AT THAT 4243 03:20:38,585 --> 03:20:39,419 RADIAL MOTION. 4244 03:20:39,419 --> 03:20:40,988 SO OPTIC FLOW. 4245 03:20:40,988 --> 03:20:42,923 AS WE MOVE THROUGH SPACE GETTING 4246 03:20:42,923 --> 03:20:45,659 AT LIKE HOW THE VISUAL FIELD 4247 03:20:45,659 --> 03:20:46,793 MOVES AS WE MOVE AROUND. 4248 03:20:46,793 --> 03:20:49,129 AND WE FOUND THERE WAS A 4249 03:20:49,129 --> 03:20:51,264 SIGNIFICANT IMPAIRMENT IN CVI 4250 03:20:51,264 --> 03:20:53,900 COMPARED TO CONTROLS. 4251 03:20:53,900 --> 03:20:55,502 AND THIS FIGURE ALSO SHOWS 4252 03:20:55,502 --> 03:20:58,205 NICELY THE SPREAD IN BEHAVES. 4253 03:20:58,205 --> 03:21:00,107 AGAIN, IT'S NOT ALL KIDS WITH 4254 03:21:00,107 --> 03:21:03,877 CVI WERE IMPACTED BUT AS A WHOLE 4255 03:21:03,877 --> 03:21:05,145 THE GROUP HAD A HIGHER THRESHOLD 4256 03:21:05,145 --> 03:21:08,582 THAN CONTROL. 4257 03:21:08,582 --> 03:21:09,816 THE BEST CVIs PERFORMED BETTER 4258 03:21:09,816 --> 03:21:10,717 THAN THE WORSE CONTROLS IF THAT 4259 03:21:10,717 --> 03:21:12,619 MAKES SENSE. 4260 03:21:12,619 --> 03:21:14,388 THE FINAL ASPECT OF MOTION IS 4261 03:21:14,388 --> 03:21:15,789 BIOLOGICAL MOTION. 4262 03:21:15,789 --> 03:21:17,090 THIS IS ALSO SOMETHING KNOWN TO 4263 03:21:17,090 --> 03:21:18,692 BE IMPACTED IN INDIVIDUALS AT 4264 03:21:18,692 --> 03:21:19,559 RISK FOR CVI. 4265 03:21:19,559 --> 03:21:21,128 THERE'S BEEN A FEW STUDIES 4266 03:21:21,128 --> 03:21:23,897 LOOKING AT THIS IN KIDS WITH 4267 03:21:23,897 --> 03:21:24,765 PBL. 4268 03:21:24,765 --> 03:21:27,501 THE EXTENT OF THE IMPAIRMENT 4269 03:21:27,501 --> 03:21:29,736 RELATED TO THE SEVERITY OF THE 4270 03:21:29,736 --> 03:21:29,903 PBL. 4271 03:21:29,903 --> 03:21:37,077 WHY IS THIS HAPPENING? 4272 03:21:37,077 --> 03:21:39,179 THE TOP IMAGE FIRST. 4273 03:21:39,179 --> 03:21:41,314 THIS IS AN INFLATED BRAIN. 4274 03:21:41,314 --> 03:21:44,551 IMAGINE YOU BLEW UP YOUR LEFT 4275 03:21:44,551 --> 03:21:46,620 HEMISPHERE LIKE A BALLOON. 4276 03:21:46,620 --> 03:21:48,555 THE COLORED BLOCKS REPRESENT 4277 03:21:48,555 --> 03:21:49,456 DIFFERENT BRAIN REGIONS. 4278 03:21:49,456 --> 03:21:53,693 THE TOP IS THE MIDDLE OF THE 4279 03:21:53,693 --> 03:21:56,763 BRAIN FROM THE INSIDE AND 4280 03:21:56,763 --> 03:21:58,465 REPRESENT EARLY VISUAL AREAS V1 4281 03:21:58,465 --> 03:22:03,603 AND V2 AND V3 AND THE LATERAL 4282 03:22:03,603 --> 03:22:06,206 SURFACE OF THE LEFT HEMISPHERE 4283 03:22:06,206 --> 03:22:07,574 AND THE GREENS AREAS ARE M2 4284 03:22:07,574 --> 03:22:09,643 IMPORTANT FOR MOTION AND THE 4285 03:22:09,643 --> 03:22:15,115 OTHER THREE ARE IN THE PARIETAL. 4286 03:22:15,115 --> 03:22:21,555 THE STUDY WANTED TO LOOK AT IS 4287 03:22:21,555 --> 03:22:23,356 IT CHANGES IN EARLY VISUAL AREAS 4288 03:22:23,356 --> 03:22:24,825 WITH THE PERFORMANCES? 4289 03:22:24,825 --> 03:22:27,094 THEY LOOKED AT CORTICAL 4290 03:22:27,094 --> 03:22:29,429 THICKNESS AND FOUND IT WAS 4291 03:22:29,429 --> 03:22:30,063 EARLIER VISUAL AREAS DRIVING THE 4292 03:22:30,063 --> 03:22:35,635 RESPONSE. 4293 03:22:35,635 --> 03:22:39,673 WE LOOKED AT THE VOLUME 4294 03:22:39,673 --> 03:22:39,940 PATHWAYS. 4295 03:22:39,940 --> 03:22:45,512 AND LOOKING AT THE FUNCTIONAL 4296 03:22:45,512 --> 03:22:49,416 RESPONSE WITHIN THESE AREAS IT 4297 03:22:49,416 --> 03:22:52,119 WAS AREA MT AT LOW THRESHOLDS 4298 03:22:52,119 --> 03:22:55,155 WHERE THE BRAIN ACTIVATION 4299 03:22:55,155 --> 03:22:56,223 PATTERS WERE REDUCED COMPARED TO 4300 03:22:56,223 --> 03:23:05,198 COULD BE CONTROLS AND DUE TO 4301 03:23:05,198 --> 03:23:07,801 FACILITATION EFFECT IN THE 4302 03:23:07,801 --> 03:23:09,669 RECEPTIVE FIELDS RESPONSE 4303 03:23:09,669 --> 03:23:12,038 OPPOSED TO THE TYPICAL 4304 03:23:12,038 --> 03:23:15,142 EXPRESSION EFFECT YOU WOULD 4305 03:23:15,142 --> 03:23:15,375 EXPECT. 4306 03:23:15,375 --> 03:23:16,843 SWITCHING GEARS TO THE VENTRAL 4307 03:23:16,843 --> 03:23:17,344 STREAM. 4308 03:23:17,344 --> 03:23:19,379 IN THE STUDY THEY DIDN'T SEE 4309 03:23:19,379 --> 03:23:20,213 MANY FACE AND RECOGNITION 4310 03:23:20,213 --> 03:23:22,015 CHALLENGES WHICH I FIND OF 4311 03:23:22,015 --> 03:23:22,282 INTEREST. 4312 03:23:22,282 --> 03:23:24,050 IN OUR OLDER INDIVIDUALS WE 4313 03:23:24,050 --> 03:23:26,219 FOUND THE OPPOSITE WHERE WE 4314 03:23:26,219 --> 03:23:28,788 SPECIFICALLY TARGET THE FOUR 4315 03:23:28,788 --> 03:23:30,891 FACE QUESTIONS IN THE INVENTORY 4316 03:23:30,891 --> 03:23:33,660 AND FOUND THAT A LARGE 4317 03:23:33,660 --> 03:23:35,629 PROPORTION OF THOSE WITH CVI 4318 03:23:35,629 --> 03:23:36,630 SOMETIMES OR ALWAYS HAD 4319 03:23:36,630 --> 03:23:40,467 DIFFICULTY WITH ALL FOUR OF THE 4320 03:23:40,467 --> 03:23:41,668 FACE-RELATED QUESTIONS AND ALL 4321 03:23:41,668 --> 03:23:44,804 THOSE WITH CVI IN THE STUDY 4322 03:23:44,804 --> 03:23:46,206 ALMOST ALWAYS HAD DIFFICULTY 4323 03:23:46,206 --> 03:23:49,242 WITH AT LEAST ONE I'D ENCOURAGE 4324 03:23:49,242 --> 03:23:52,312 YOU TO DEFINITELY TEST THIS OR 4325 03:23:52,312 --> 03:23:59,786 THINK ABOUT IT IN WERE KIDS. 4326 03:23:59,786 --> 03:24:02,189 THE LEFT IS CONTROL AND THE 4327 03:24:02,189 --> 03:24:04,858 RIGHT IS SOMEONE WITH CVI. 4328 03:24:04,858 --> 03:24:07,694 WHAT ARE CORRELATIONS THEN? 4329 03:24:07,694 --> 03:24:10,230 WE LOOKED AT AXIAL DIFFUSIVITY 4330 03:24:10,230 --> 03:24:15,802 AND THIS MARKER HAS BEEN RELATED 4331 03:24:15,802 --> 03:24:26,313 TO AXIAL ENTRY AND THEY WERE 4332 03:24:29,716 --> 03:24:30,483 ASSOCIATED WITH WORSE FACIAL 4333 03:24:30,483 --> 03:24:35,488 RECOGNITION TASK WITH 4334 03:24:35,488 --> 03:24:38,058 INDIVIDUALS WIN CVI AND FOR 4335 03:24:38,058 --> 03:24:40,160 OBJECT RECOGNITION IT WAS 4336 03:24:40,160 --> 03:24:45,332 ASSOCIATED WITH PERFORMANCE ON 4337 03:24:45,332 --> 03:24:53,640 THE BATTERY IT'S REPORTED LOTS 4338 03:24:53,640 --> 03:24:58,979 OF TIMES BY PARENTS AND 4339 03:24:58,979 --> 03:25:01,214 INDIVIDUALS WITH CVI AND 4340 03:25:01,214 --> 03:25:02,649 CONSISTENTLY BEEN REPORTED NOT 4341 03:25:02,649 --> 03:25:05,619 JUST ACROSS DIFFERENT TASKS BUT 4342 03:25:05,619 --> 03:25:08,788 AGE RANGES AND RESPONSE TYPES. 4343 03:25:08,788 --> 03:25:10,890 THERE'S THREE EXAMPLE STUDIES 4344 03:25:10,890 --> 03:25:12,926 FROM LOT V WE DID TOGETHER AND 4345 03:25:12,926 --> 03:25:18,098 THE ONE IN THE MIDDLE IS 4346 03:25:18,098 --> 03:25:20,433 COURTESY OF A GROUP KIND ENOUGH 4347 03:25:20,433 --> 03:25:30,977 TO SHARE THESE PICTURES WITH ME. 4348 03:25:40,954 --> 03:25:42,222 THIS IS A MOTOR RESPONSE FOR 4349 03:25:42,222 --> 03:25:46,192 THAT VERSION. 4350 03:25:46,192 --> 03:25:49,129 THEY USE EYE TRACKING AND THIS 4351 03:25:49,129 --> 03:25:50,297 IS IN YOUNGER CHILDREN. 4352 03:25:50,297 --> 03:25:51,564 OURS WAS IN OLDER CHILDREN AND 4353 03:25:51,564 --> 03:25:53,633 YOUNG ADULTS. 4354 03:25:53,633 --> 03:25:55,669 THERE'S A TRACKING AND NOT ALL 4355 03:25:55,669 --> 03:25:57,604 THE KIDS KNOW THEIR LETTERS. 4356 03:25:57,604 --> 03:26:00,173 IT'S BLUE AND RED CIRCLES AND 4357 03:26:00,173 --> 03:26:04,411 SQUARES AND THEN OTHER VIRTUAL 4358 03:26:04,411 --> 03:26:04,744 ENVIRONMENTS. 4359 03:26:04,744 --> 03:26:10,016 VIRTUAL TOY BOX AND THERE'S A 4360 03:26:10,016 --> 03:26:20,560 VIRTUAL TASK AND WHEREBY THOSE 4361 03:26:28,601 --> 03:26:30,003 WITH CVI SHOWED IMPAIRMENTS ON 4362 03:26:30,003 --> 03:26:32,439 RESPONSE TIME, ACCURACY AND SO 4363 03:26:32,439 --> 03:26:34,574 ON AND SO FORTH. 4364 03:26:34,574 --> 03:26:36,176 SO FAR AS THE EYE GAZE WAS 4365 03:26:36,176 --> 03:26:37,243 RELATIVELY CONSISTENT ACROSS THE 4366 03:26:37,243 --> 03:26:37,577 TASKS. 4367 03:26:37,577 --> 03:26:39,079 AND ONE THING TO POINT OUT IS 4368 03:26:39,079 --> 03:26:41,181 THAT THE DATA FROM THE DUTCH 4369 03:26:41,181 --> 03:26:43,750 GROUP ALSO SHOWS THIS WAS IN THE 4370 03:26:43,750 --> 03:26:45,452 CVI GROUP NOT ONLY COMPARED TO 4371 03:26:45,452 --> 03:26:46,686 CONTROLS BUT CLINICAL CONTROLS 4372 03:26:46,686 --> 03:26:48,755 AND ADHD AND DYSLEXIA. 4373 03:26:48,755 --> 03:26:54,894 WHY THIS? 4374 03:26:54,894 --> 03:26:56,629 AND AND THERE ARE TWO ATTENTION 4375 03:26:56,629 --> 03:26:58,798 NETWORKS IN THE BRAIN, THE 4376 03:26:58,798 --> 03:27:01,267 DORSAL ATTENTION NETWORK 4377 03:27:01,267 --> 03:27:03,370 TOP-DOWN CONTROL OF ATTENTION 4378 03:27:03,370 --> 03:27:09,476 AND THE NETWORK MORE LIKE A 4379 03:27:09,476 --> 03:27:11,211 SUBCONSCIOUS BOTTOM UP AND 4380 03:27:11,211 --> 03:27:13,413 THEY'RE IMPORTANT FOR FINDING AN 4381 03:27:13,413 --> 03:27:15,882 OBJECT AND DISENGAGING TO FIND A 4382 03:27:15,882 --> 03:27:16,916 NEW STIMULUS. 4383 03:27:16,916 --> 03:27:20,086 WE NEED THEM BOTH TO NOT JUST 4384 03:27:20,086 --> 03:27:21,187 HAVE GOOD CONNECTIVITY WITHIN 4385 03:27:21,187 --> 03:27:23,623 THE NETWORKS AND TALK TO EACH 4386 03:27:23,623 --> 03:27:33,967 OTHER WHICH THEY DO. 4387 03:27:34,234 --> 03:27:40,306 AND THESE ARE CONNECTED THROUGH 4388 03:27:40,306 --> 03:27:45,278 SUBDIVISIONS OF THE SLF AND 4389 03:27:45,278 --> 03:27:55,822 PREVIOUS DATA AND THIS IS RECENT 4390 03:27:59,092 --> 03:28:00,460 DATA WE'RE STILL WORK ON BUT 4391 03:28:00,460 --> 03:28:02,028 WANTED TO SHARE IT WITH YOU GUYS 4392 03:28:02,028 --> 03:28:04,898 AND THINK IT HAS IMPLICATIONS 4393 03:28:04,898 --> 03:28:05,765 POTENTIALLY WITH THE MECHANISMS 4394 03:28:05,765 --> 03:28:15,975 BEHIND THIS. 4395 03:28:18,445 --> 03:28:20,780 AND WITHIN VISUAL AREAS FOR 4396 03:28:20,780 --> 03:28:22,282 CONTROLS IN BLUE AND INDIVIDUALS 4397 03:28:22,282 --> 03:28:25,018 WITH CVI IN ORANGE. 4398 03:28:25,018 --> 03:28:25,919 THIS IS THE CORRELATION 4399 03:28:25,919 --> 03:28:27,821 COEFFICIENT WITHIN NETWORK 4400 03:28:27,821 --> 03:28:30,223 CONNECTIVITY AND ACCURACY ON THE 4401 03:28:30,223 --> 03:28:31,357 CONJUNCTION SEARCH PARADIGM AND 4402 03:28:31,357 --> 03:28:32,992 IN CONTROLS ONLY. 4403 03:28:32,992 --> 03:28:35,528 IT WAS SIGNIFICANTLY CORRELATED 4404 03:28:35,528 --> 03:28:37,831 AFTER ADJUSTING FOR VERBAL I.Q. 4405 03:28:37,831 --> 03:28:40,233 AND AGE WITH NETWORK OF THE 4406 03:28:40,233 --> 03:28:42,035 DORSAL AND VENTRAL NETWORKS BUT 4407 03:28:42,035 --> 03:28:42,969 NOT CVIs. 4408 03:28:42,969 --> 03:28:45,205 WHEN WE LOOK BETWEEN NETWORK 4409 03:28:45,205 --> 03:28:47,540 CORRELATIONS WE HAVE TO HAVE 4410 03:28:47,540 --> 03:28:49,042 BOTH WITHIN AND BETWEEN 4411 03:28:49,042 --> 03:28:49,776 CONNECTIVITY AND COMMUNICATION 4412 03:28:49,776 --> 03:28:51,377 TO DO THE TASK. 4413 03:28:51,377 --> 03:28:54,113 AGAIN WE SEE THERE'S A DIFFERENT 4414 03:28:54,113 --> 03:28:55,982 STORY GOING ON WHERE THE 4415 03:28:55,982 --> 03:29:00,520 CONTROLS IS MORE OF THE CORTICAL 4416 03:29:00,520 --> 03:29:01,154 CONNECTIONS AND COMMUNICATION 4417 03:29:01,154 --> 03:29:05,625 WHEREAS IN THE CVI GROUP IT 4418 03:29:05,625 --> 03:29:08,595 TENDED TO BE MORE CORTICAL 4419 03:29:08,595 --> 03:29:14,501 CONNECTIVITY ASSOCIATED WITH 4420 03:29:14,501 --> 03:29:17,637 ACTIVITY AND WE'RE LOOKING AT 4421 03:29:17,637 --> 03:29:22,976 WHAT IS TE BRAIN ACTIVITY AND 4422 03:29:22,976 --> 03:29:24,511 PARS THAT OUT. 4423 03:29:24,511 --> 03:29:25,712 THANK YOU FOR LETTING ME SHARE 4424 03:29:25,712 --> 03:29:27,180 AND THANKS TO THE PARTICIPANTS 4425 03:29:27,180 --> 03:29:29,616 AND FAMILIES AND COLLABORATORS. 4426 03:29:29,616 --> 03:29:34,988 THANKS. 4427 03:29:34,988 --> 03:29:37,991 >> THANK YOU, CORINNA. 4428 03:29:37,991 --> 03:29:39,993 WE HAVE DR. PRUSKY IS OUR NEXT 4429 03:29:39,993 --> 03:29:46,799 SPEAKER AND WE HAVE A BIT OF A 4430 03:29:46,799 --> 03:29:47,634 TECHNICAL CHANGE. 4431 03:29:47,634 --> 03:29:50,370 HE'S A PROFESSOR AND LAB 4432 03:29:50,370 --> 03:29:55,675 DIRECTOR PHYSIOLOGY AND 4433 03:29:55,675 --> 03:29:57,010 BIOPHYSICS BURKE NEUROLOGICAL 4434 03:29:57,010 --> 03:30:01,548 INSTITUTE WEILL CORNELL MEDICINE 4435 03:30:01,548 --> 03:30:02,749 TALKING ABOUT EYE TRACKING. 4436 03:30:02,749 --> 03:30:08,087 >> THIS IS A QUESTION FOR 4437 03:30:08,087 --> 03:30:11,190 CORINNA FOR LATER, ONE OF MY 4438 03:30:11,190 --> 03:30:12,959 ANSWERS TO WHAT KERRY WOULD LIKE 4439 03:30:12,959 --> 03:30:16,629 TO SEE IN A REGISTRY IS WOULD 4440 03:30:16,629 --> 03:30:18,665 LOVE TO SEE SOME MAPPING OF 4441 03:30:18,665 --> 03:30:21,434 STRUCTURE TO FUNCTION. 4442 03:30:21,434 --> 03:30:25,405 WE KNOW THE MRI CAN'T BE MAPPED 4443 03:30:25,405 --> 03:30:25,672 DIRECTLY. 4444 03:30:25,672 --> 03:30:26,539 TWO QUESTIONS. 4445 03:30:26,539 --> 03:30:29,042 ONE, WHAT TYPES OF IMAGING CAN 4446 03:30:29,042 --> 03:30:39,552 WE INCLUDE IN A REGISTRY AND 4447 03:30:44,324 --> 03:30:47,627 SHARE DATA AND I GUESS IF WE 4448 03:30:47,627 --> 03:30:49,562 WERE TO PUT -- IF DIFFERENT 4449 03:30:49,562 --> 03:30:52,599 PEOPLE WERE TO PUT IMAGES IN THE 4450 03:30:52,599 --> 03:30:55,401 DATABASE COULD YOU CARE ACROSS 4451 03:30:55,401 --> 03:30:57,637 MACHINES OR IS THERE SOME 4452 03:30:57,637 --> 03:31:00,506 METRICS YOU CAN PULL OUT IN 4453 03:31:00,506 --> 03:31:02,809 COMPARING FROM A REGISTRY AND 4454 03:31:02,809 --> 03:31:05,211 ANYTHING YOU CAB USE FROM A 4455 03:31:05,211 --> 03:31:05,578 DATABASE? 4456 03:31:05,578 --> 03:31:09,649 THROW IT OUT FOR DISCUSSION 4457 03:31:09,649 --> 03:31:12,285 LATER. 4458 03:31:12,285 --> 03:31:12,752 >> THANK YOU. 4459 03:31:12,752 --> 03:31:14,554 I'M PLEASED TO BE HERE. 4460 03:31:14,554 --> 03:31:17,457 I'M GRATEFUL TO THE ORGANIZER 4461 03:31:17,457 --> 03:31:19,692 FOR AN INVITATION AND CHERI. 4462 03:31:19,692 --> 03:31:21,160 SHE'S BEEN WITH US A LONG TIME. 4463 03:31:21,160 --> 03:31:23,129 THANKS VERY MUCH. 4464 03:31:23,129 --> 03:31:25,298 I'M GOING TO TALK ABOUT 4465 03:31:25,298 --> 03:31:27,600 OBJECTIVE MEASURES OF VISUAL 4466 03:31:27,600 --> 03:31:28,868 FUNCTION IN CHILDREN WITH BRAIN 4467 03:31:28,868 --> 03:31:29,469 INJURY. 4468 03:31:29,469 --> 03:31:35,308 SO IT PROBABLY COMES AS NO 4469 03:31:35,308 --> 03:31:38,578 SURPRISE THAT IN CHILDREN WITH 4470 03:31:38,578 --> 03:31:45,652 LIVER FUNCTION RELIES ON 4471 03:31:45,652 --> 03:31:56,062 SUBJECTIVE NEURO OPHTHALMALGIC 4472 03:31:56,062 --> 03:31:57,664 APPROACH AND THINK THERE'S A WAY 4473 03:31:57,664 --> 03:31:59,932 OF APPROVING THE APPROACH. 4474 03:31:59,932 --> 03:32:02,235 THE PREMISE IS THERE'S A NEED TO 4475 03:32:02,235 --> 03:32:07,040 OBJECTIFY AND QUANTIFY VISUAL 4476 03:32:07,040 --> 03:32:08,474 FUNCTION IN BRAIN INJURED 4477 03:32:08,474 --> 03:32:09,442 CHILDREN CAN AND CHARACTERIZE 4478 03:32:09,442 --> 03:32:11,044 HOW IT CHANGES OVER TIME. 4479 03:32:11,044 --> 03:32:12,478 IT'S IMPORTANT WE DO THAT 4480 03:32:12,478 --> 03:32:14,814 BECAUSE AS I SAID EARLIER WITH 4481 03:32:14,814 --> 03:32:15,748 DEVELOPMENT ISSUES. 4482 03:32:15,748 --> 03:32:18,117 IN ORDER TO BETTER DEFINE AND 4483 03:32:18,117 --> 03:32:24,757 DIAGNOSIS AND TREAT CVI. 4484 03:32:24,757 --> 03:32:28,161 OUR HYPOTHESIS IS THAT THE 4485 03:32:28,161 --> 03:32:29,629 OBJECTIVE MEASURES OF VISUAL 4486 03:32:29,629 --> 03:32:31,764 FUNCTION CAN BE MADE IN CHILDREN 4487 03:32:31,764 --> 03:32:35,635 WITH BRAIN INJURY TO THE 4488 03:32:35,635 --> 03:32:36,903 QUANTITATIVE ANALYSIS. 4489 03:32:36,903 --> 03:32:40,440 WE LESSLY EVERY DAY LOOK AROUND 4490 03:32:40,440 --> 03:32:43,643 AND USING OR EYES AND WE 4491 03:32:43,643 --> 03:32:45,845 SOMETIMES THINK OF THE EYE 4492 03:32:45,845 --> 03:32:48,448 MOVEMENT SYSTEM AND IT'S BAKED 4493 03:32:48,448 --> 03:32:53,920 UP AND DOESN'T MAKE SENSE THE 4494 03:32:53,920 --> 03:32:56,189 VISUAL SYSTEM IF YOU DON'T THINK 4495 03:32:56,189 --> 03:32:57,523 OF MOVEMENT AND INFORMATION'S 4496 03:32:57,523 --> 03:32:58,658 MOVING IN THE WORLD AND RUNS 4497 03:32:58,658 --> 03:33:01,194 FROM THE TOP TO THE BOTTOM AND 4498 03:33:01,194 --> 03:33:04,530 FRONT AND BACK OF THE BRAIN. 4499 03:33:04,530 --> 03:33:10,136 THAT'S WHY VISION IS SO OFTEN 4500 03:33:10,136 --> 03:33:12,405 AFFECTED IN BRAIN INJURY. 4501 03:33:12,405 --> 03:33:14,974 WE TAKE AN APPROACH FROM LOW 4502 03:33:14,974 --> 03:33:17,310 LEVEL INFORMATION UP TO HIGHER 4503 03:33:17,310 --> 03:33:19,178 LEVEL AND WE THINK THE EYE 4504 03:33:19,178 --> 03:33:20,379 TRACKING CAN ADDRESS THIS. 4505 03:33:20,379 --> 03:33:21,681 WE'RE WORKING ON THINGS BELOW 4506 03:33:21,681 --> 03:33:27,954 AND ABOVE BUT TODAY I'M GOING TO 4507 03:33:27,954 --> 03:33:33,192 SHARE WITH YOU OUR AND AND WE 4508 03:33:33,192 --> 03:33:35,795 HAVE A VARIETY OF EYE HOMES THAT 4509 03:33:35,795 --> 03:33:36,729 ARE EFFORTLESS. 4510 03:33:36,729 --> 03:33:41,868 WE DON'T THINK ABOUT THEM ON A 4511 03:33:41,868 --> 03:33:45,638 DAY TO DAY BASIS BUT WE HAVE 4512 03:33:45,638 --> 03:33:47,573 SACCADIC MOVEMENTS AND THERE'S 4513 03:33:47,573 --> 03:33:48,775 PERIODIC FIXATIONS AND FAST 4514 03:33:48,775 --> 03:33:53,379 MOVEMENTS TO GET TO THOSE LACES 4515 03:33:53,379 --> 03:33:58,050 AND EYE MOVEMENTS THAT ALLOW US 4516 03:33:58,050 --> 03:34:01,120 TO TAKE INFORMATION THAT APPEARS 4517 03:34:01,120 --> 03:34:05,625 AND AS IT MOVES WE FOLLOW THAT 4518 03:34:05,625 --> 03:34:10,363 TO MAINTAIN THE INFORMATION. 4519 03:34:10,363 --> 03:34:13,065 USING THESE SACCADIC EYE 4520 03:34:13,065 --> 03:34:14,433 MOVEMENTS WE DEVELOPED VISUAL 4521 03:34:14,433 --> 03:34:15,968 FIELD FIXATION MAPPING. 4522 03:34:15,968 --> 03:34:20,473 WE PUT INFORMATION INTO KNOWN 4523 03:34:20,473 --> 03:34:21,407 PLACES IN THE VISUAL FIELD AND 4524 03:34:21,407 --> 03:34:23,776 SINCE WE KNOW WHERE IT IS WE CAN 4525 03:34:23,776 --> 03:34:26,412 MOVE IT TO LOCATIONS AND BUILD A 4526 03:34:26,412 --> 03:34:27,747 FIELD MAP OF AN INDIVIDUAL 4527 03:34:27,747 --> 03:34:30,116 BASICALLY I'LL SHOW IN A SECOND 4528 03:34:30,116 --> 03:34:31,617 BASICALLY MAPPING WHERE THEY'RE 4529 03:34:31,617 --> 03:34:34,954 ABLE TO SEE AND HOW QUICKLY THEY 4530 03:34:34,954 --> 03:34:36,322 CAN MOVE TO THOSE A MOVEMENT SO 4531 03:34:36,322 --> 03:34:41,260 FORTH. 4532 03:34:41,260 --> 03:34:46,866 WE ALSO HAVE A SPATIAL VISION 4533 03:34:46,866 --> 03:34:50,803 TASK OF VISUAL ACUITY AND 4534 03:34:50,803 --> 03:34:51,103 SENSITIVITY. 4535 03:34:51,103 --> 03:34:53,105 AND IT'S STANDARD AS ANY IS IB 4536 03:34:53,105 --> 03:34:56,242 VISION BUT HAS WEAKNESSES. 4537 03:34:56,242 --> 03:34:58,444 IT'S A MUCH BETTER APPROACH TO 4538 03:34:58,444 --> 03:35:01,647 THIS AND SO WE HAVE DEVELOPED A 4539 03:35:01,647 --> 03:35:03,249 TASK ABLE TO MEASURE CONTRAST 4540 03:35:03,249 --> 03:35:05,251 SENSITIVITY EVEN IN 4541 03:35:05,251 --> 03:35:07,019 BRAIN-INJURED INDIVIDUALS AND IT 4542 03:35:07,019 --> 03:35:12,458 INVOLVES WE HAVE A PATCH OF 4543 03:35:12,458 --> 03:35:16,162 KNOWN VISUAL FREQUENCY AND 4544 03:35:16,162 --> 03:35:19,599 CONTRAST AND JUDGE HOW WELL YOU 4545 03:35:19,599 --> 03:35:20,399 FOLLOW THAT. 4546 03:35:20,399 --> 03:35:21,067 YOU'RE FOLLOWING MAKES IT 4547 03:35:21,067 --> 03:35:22,602 DISAPPEAR IN FRONT OF YOU. 4548 03:35:22,602 --> 03:35:24,637 IT CAN HAPPEN QUICKLY AND 4549 03:35:24,637 --> 03:35:28,474 ACCESSIBLE TO MANY INDIVIDUALS. 4550 03:35:28,474 --> 03:35:29,342 THIS IS CHILDREN'S HOSPITAL. 4551 03:35:29,342 --> 03:35:33,045 THIS IS A TYPICAL TESTING 4552 03:35:33,045 --> 03:35:33,279 CENTER. 4553 03:35:33,279 --> 03:35:34,580 HERE'S OUR COMPUTER. 4554 03:35:34,580 --> 03:35:36,115 THERE'S A SUBJECT IN THEIR BED 4555 03:35:36,115 --> 03:35:38,284 AND WE HAVE DONE THIS OVER THE 4556 03:35:38,284 --> 03:35:39,118 PAST THREE AND A HALF TO FOUR 4557 03:35:39,118 --> 03:35:45,458 YEARS. 4558 03:35:45,458 --> 03:35:47,627 HERE'S A QUICK EXAMPLE OF WHAT 4559 03:35:47,627 --> 03:35:57,904 THIS LOOKS LIKE. 4560 03:36:04,143 --> 03:36:09,515 THIS IS A TASK. 4561 03:36:09,515 --> 03:36:14,353 YOU ZAP OBJECTS ON THE SCREEN. 4562 03:36:14,353 --> 03:36:17,023 KIDS LOVE THIS BECAUSE MANY ARE 4563 03:36:17,023 --> 03:36:19,625 BED RIDDEN SO IT'S A REAL FORM 4564 03:36:19,625 --> 03:36:22,595 OF ACTIVITY THEY CAN PARTICIPATE 4565 03:36:22,595 --> 03:36:24,330 IN. 4566 03:36:24,330 --> 03:36:34,640 THIS IS SACCADIC INDUCING TASK 4567 03:36:34,640 --> 03:36:35,274 AND THE VISUAL FIELD TASK THAT 4568 03:36:35,274 --> 03:36:41,347 COMES UP. 4569 03:36:41,347 --> 03:36:50,523 THE SMOOTH TRACKING TASK. 4570 03:36:50,523 --> 03:36:53,626 WE HAVE CUSTOMIZATION AND CAN 4571 03:36:53,626 --> 03:36:54,260 MOTIVATE INDIVIDUALS OF VARYING 4572 03:36:54,260 --> 03:37:02,435 CAPACITIES. 4573 03:37:02,435 --> 03:37:05,271 THIS IS RAW DATA FOR SACCADE AND 4574 03:37:05,271 --> 03:37:07,206 VISUAL FIELD AND THE TASK FOR 4575 03:37:07,206 --> 03:37:07,807 SPATIAL VISION COMES IN THREE 4576 03:37:07,807 --> 03:37:17,917 FORMS. 4577 03:37:26,659 --> 03:37:31,897 THERE'S A FULL FIELD OF THOSE 4578 03:37:31,897 --> 03:37:42,408 WHO CAN'T FOLLOW I CHANGES IN 4579 03:37:44,443 --> 03:37:45,644 FRONT OF YOU. 4580 03:37:45,644 --> 03:37:46,879 HERE'S THE SINGLE BALL TASK 4581 03:37:46,879 --> 03:37:57,156 COMING UP HERE. 4582 03:38:07,233 --> 03:38:10,302 SAME IDEA. 4583 03:38:10,302 --> 03:38:13,039 YOU HAVE TO PROCESS AND THERE'S 4584 03:38:13,039 --> 03:38:17,276 A MULTI-GOAL TASK AND KIDS LIKE 4585 03:38:17,276 --> 03:38:19,645 THIS BECAUSE IT'S VERY FUN. 4586 03:38:19,645 --> 03:38:25,751 YOU TAKE ONE BALL AT A TIME. 4587 03:38:25,751 --> 03:38:29,622 YOU GO UNTIL YOU MAKE IT 4588 03:38:29,622 --> 03:38:30,523 DISAPPEAR. 4589 03:38:30,523 --> 03:38:32,858 THAT'S THE GOAL. 4590 03:38:32,858 --> 03:38:34,193 AGAIN, THE SCORING SYSTEM ALLOWS 4591 03:38:34,193 --> 03:38:36,028 KIDS DO THIS REGULARLY. 4592 03:38:36,028 --> 03:38:38,364 THERE'S GREAT MOTIVATION. 4593 03:38:38,364 --> 03:38:39,532 IT'S FUN. 4594 03:38:39,532 --> 03:38:41,634 BROTHERS AND SISTERS GET 4595 03:38:41,634 --> 03:38:51,911 INVOLVED OFTEN. 4596 03:39:03,889 --> 03:39:07,126 THIS IS THE CONTRAST SPECIFICITY 4597 03:39:07,126 --> 03:39:08,127 YOU'LL SEE HERE. 4598 03:39:08,127 --> 03:39:09,728 SO WHAT DO THE DATA LOOK LIKE 4599 03:39:09,728 --> 03:39:11,530 THAT COME OFF THIS? 4600 03:39:11,530 --> 03:39:13,632 THIS IS AN EXAMPLE OF SACCADIC 4601 03:39:13,632 --> 03:39:16,502 DISTRIBUTION AND A TYPICAL BOW 4602 03:39:16,502 --> 03:39:27,113 TIE LIKE OR MORE SA SACCADE AD 4603 03:39:29,615 --> 03:39:32,885 MANY WHO ARE NON-COMMUNICATIVE 4604 03:39:32,885 --> 03:39:37,256 HAVE NORMAL DISTRIBUTION OF 4605 03:39:37,256 --> 03:39:42,361 SACCADES AND YOU CAN HAVE 4606 03:39:42,361 --> 03:39:45,798 INDIVIDUALS THAT HAVE ANYSTAGMUS 4607 03:39:45,798 --> 03:39:49,635 AND THE DEGREE AND SO FORTH. 4608 03:39:49,635 --> 03:39:51,871 THERE'S VISUAL MAPPING. 4609 03:39:51,871 --> 03:39:55,608 IN WHITE IS GOOD AND YOU SEE 4610 03:39:55,608 --> 03:39:57,643 INDIVIDUALS WITH HOLE IN THAT 4611 03:39:57,643 --> 03:39:59,612 FIELD AND ALL THIS IS 4612 03:39:59,612 --> 03:40:01,247 QUANTITATIVE AND THIS IS A FULL 4613 03:40:01,247 --> 03:40:04,183 FIELD TASK I TOLD YOU AND THE 4614 03:40:04,183 --> 03:40:06,152 BALL TASK. 4615 03:40:06,152 --> 03:40:09,255 WE CAN GENERATE EVEN IN CHILDREN 4616 03:40:09,255 --> 03:40:11,123 MANY PEOPLE WILL HAVE THEIR 4617 03:40:11,123 --> 03:40:13,659 CONTRAST MEASURED BUT WE CAN DO 4618 03:40:13,659 --> 03:40:15,161 THAT REGULARLY IB CHILDREN. 4619 03:40:15,161 --> 03:40:16,128 -- IN CHILDREN. 4620 03:40:16,128 --> 03:40:19,965 SO, HOW DO WE EXTRACT DATA FROM 4621 03:40:19,965 --> 03:40:20,633 THIS THAT'S MEANINGFUL AND 4622 03:40:20,633 --> 03:40:21,000 USEFUL? 4623 03:40:21,000 --> 03:40:25,638 WE NEED TO REDUCE THE 4624 03:40:25,638 --> 03:40:26,205 HIGH-DIMENSIONAL DATA TO 4625 03:40:26,205 --> 03:40:29,608 IMAGINABLE FORM. 4626 03:40:29,608 --> 03:40:34,980 WE START WITH AN ANALYSIS AND 4627 03:40:34,980 --> 03:40:36,849 FROM MANY EYE HOMES THERE'S 4628 03:40:36,849 --> 03:40:37,883 MOVEMENTS ALONG THE HORIZON AND 4629 03:40:37,883 --> 03:40:40,753 UP AND DOWN AND DIAGONAL AND SO 4630 03:40:40,753 --> 03:40:43,622 FORTH AND CONFIRMED THE 4631 03:40:43,622 --> 03:40:46,959 PRELIMINARY PCA AND I WON'T SHOW 4632 03:40:46,959 --> 03:40:53,632 THE DATA RIGHT NOW. 4633 03:40:53,632 --> 03:40:58,103 WE HAVE BIAS SCORES AND THIS IS 4634 03:40:58,103 --> 03:40:59,872 THE SORT OF THING WE GET. 4635 03:40:59,872 --> 03:41:03,275 I'VE ALWAYS HATED SLIDES LIKE 4636 03:41:03,275 --> 03:41:05,611 THIS BUT WOW THERE'S A LOT OF 4637 03:41:05,611 --> 03:41:10,916 DATA HERE. 4638 03:41:10,916 --> 03:41:13,018 I ZOOMED IN TO SHOW YOU WHAT 4639 03:41:13,018 --> 03:41:15,254 SOME OF IT LOOKS LIKE. 4640 03:41:15,254 --> 03:41:16,555 SACCADES, PURSUITS, FIELD, 4641 03:41:16,555 --> 03:41:17,122 CONTRAST SENSITIVITY AND SO 4642 03:41:17,122 --> 03:41:19,258 FORTH. 4643 03:41:19,258 --> 03:41:22,428 YOU CAN SEE THE WEALTH OF DATA 4644 03:41:22,428 --> 03:41:25,264 HERE AND WE CAN ANALYZE AMONG A 4645 03:41:25,264 --> 03:41:27,533 HUGE AMOUNT OF DIMENSIONS. 4646 03:41:27,533 --> 03:41:31,937 FOR EXAMPLE, THE BLUE BAR 4647 03:41:31,937 --> 03:41:33,806 REPRES 4648 03:41:33,806 --> 03:41:37,643 REPRESENTS H CONTROLS AND THE 4649 03:41:37,643 --> 03:41:38,811 YELLOW REPRESENT THE POSITION 4650 03:41:38,811 --> 03:41:41,213 AND 98 HERE AND 72 IN HERE AND 4651 03:41:41,213 --> 03:41:44,350 FAR A VARIETY OF REASONS THERE'S 4652 03:41:44,350 --> 03:41:45,050 DIFFERENT LEVELS. 4653 03:41:45,050 --> 03:41:49,888 AND FOR EXAMPLE, SACCADES YOU 4654 03:41:49,888 --> 03:41:51,056 CAN SEE THERE'S GREAT 4655 03:41:51,056 --> 03:41:52,191 DISTRIBUTION. 4656 03:41:52,191 --> 03:41:52,758 THESE INDIVIDUALS HERE ARE 4657 03:41:52,758 --> 03:41:59,632 HIGHLY IMPAIRED. 4658 03:41:59,632 --> 03:42:03,369 YOU CAN SEE THEY CLUMP AROUND 4659 03:42:03,369 --> 03:42:09,008 AND YOU CAN SEE THE LATENCY ARE 4660 03:42:09,008 --> 03:42:14,780 SHORT HERE BUT FOR CONTRAST AND 4661 03:42:14,780 --> 03:42:20,552 SENSITIVITY MOST HAD SOME 4662 03:42:20,552 --> 03:42:21,654 CONTRAST DEFICITS. 4663 03:42:21,654 --> 03:42:25,724 THIS IS A METRIC OF NYSTAGMUS 4664 03:42:25,724 --> 03:42:27,359 AND SOME HAD A FORM OF THAT. 4665 03:42:27,359 --> 03:42:29,995 THE SUMMARY OF THOSE METRICS 4666 03:42:29,995 --> 03:42:32,798 WERE WE WERE ABLE IT QUANTIFY 4667 03:42:32,798 --> 03:42:36,268 THIS IN THIS POPULATION FROM 3 4668 03:42:36,268 --> 03:42:38,904 TO 18 THAT ARE ON THE ACUTE 4669 03:42:38,904 --> 03:42:41,874 BRAIN INJURY AWARD. 4670 03:42:41,874 --> 03:42:46,445 WE TOOK ALL AND SO WE WERE ABLE 4671 03:42:46,445 --> 03:42:48,580 TO DO THAT. 4672 03:42:48,580 --> 03:42:50,949 OUTLIERS IN THIS CASE REPRESENT 4673 03:42:50,949 --> 03:42:52,151 OBJECTIVE EVIDENCE OF 4674 03:42:52,151 --> 03:42:55,220 ABNORMALITY AND THE DEGREE. 4675 03:42:55,220 --> 03:42:56,689 NOT JUST YES OR NO. 4676 03:42:56,689 --> 03:42:58,190 WE CAN OBJECTIVELY DETERMINED 4677 03:42:58,190 --> 03:43:03,495 WHAT IT IS AND TO WHAT DEGREE 4678 03:43:03,495 --> 03:43:07,733 IT'S ABNORMAL. 4679 03:43:07,733 --> 03:43:10,302 THERE'S HETEROGENEITY AMONG MANY 4680 03:43:10,302 --> 03:43:10,669 DIMENSION. 4681 03:43:10,669 --> 03:43:14,406 WHAT DO WE DO WITH THE DATA NOW? 4682 03:43:14,406 --> 03:43:24,283 HOW DO WE LOOK AT THIS? 4683 03:43:24,283 --> 03:43:26,018 WE LOOK AT THE OPAQUENESS AND IT 4684 03:43:26,018 --> 03:43:29,555 ALLOWS US TO GET OUR TEETH IN 4685 03:43:29,555 --> 03:43:30,522 THE DATA TO UNDERSTAND THE 4686 03:43:30,522 --> 03:43:35,427 DIVERSITY AND INTERACTIONS AMONG 4687 03:43:35,427 --> 03:43:36,328 SUBJECTS. 4688 03:43:36,328 --> 03:43:37,663 THERE'S METRICS ON HERE AND PUT 4689 03:43:37,663 --> 03:43:41,133 THEM INTO THE CORRELATION TABLE. 4690 03:43:41,133 --> 03:43:44,770 AND SO THERE'S EXPECTED 4691 03:43:44,770 --> 03:43:45,070 CORRELATION. 4692 03:43:45,070 --> 03:43:49,942 THIS IS IN PURSUITS. 4693 03:43:49,942 --> 03:43:53,112 CHILDREN WITH SACCADE DISTANCE 4694 03:43:53,112 --> 03:43:55,881 BIAS ALSO HAVE CORRESPONDING 4695 03:43:55,881 --> 03:43:56,882 DIRECTION SPEED BOXES. 4696 03:43:56,882 --> 03:43:59,551 YOU MOVE OUR EYES OVER A GREATER 4697 03:43:59,551 --> 03:44:00,853 DISTANCE -- WHEN YOU MOVE YOUR 4698 03:44:00,853 --> 03:44:02,988 EYES FROM HERE TO HERE AND TAKE 4699 03:44:02,988 --> 03:44:05,190 THE SAME AMOUNT OF TIME JUST 4700 03:44:05,190 --> 03:44:07,226 MOVE THEM FASTER. 4701 03:44:07,226 --> 03:44:09,228 THERE'S GREAT CORRELATION 4702 03:44:09,228 --> 03:44:12,197 BETWEEN THOSE AND THERE'S HIGH 4703 03:44:12,197 --> 03:44:13,365 CORRELATIONS. 4704 03:44:13,365 --> 03:44:15,367 AND WHEN YOU LOOK AT THIS OVER 4705 03:44:15,367 --> 03:44:20,906 HERE IT'S VERY UNEXPECTED. 4706 03:44:20,906 --> 03:44:22,975 PEOPLE WITH BETTER VISUAL FIELDS 4707 03:44:22,975 --> 03:44:25,644 MOVING TO THAT POSITION THEY HAD 4708 03:44:25,644 --> 03:44:27,045 BETTER SPATIAL VISION. 4709 03:44:27,045 --> 03:44:28,147 WE NEVER IMAGINED THIS WOULD 4710 03:44:28,147 --> 03:44:31,683 COME OUT OF THE DATA SET. 4711 03:44:31,683 --> 03:44:35,621 IN FACT AT THE PCA THIS FACTOR 4712 03:44:35,621 --> 03:44:38,791 RIGHT HERE ACCOUNTS FOR 35% OF 4713 03:44:38,791 --> 03:44:39,224 TOTAL. 4714 03:44:39,224 --> 03:44:41,360 HERE'S THE SORT OF THING WE'RE 4715 03:44:41,360 --> 03:44:42,094 NOW ABLE TO DO. 4716 03:44:42,094 --> 03:44:44,963 NOW WE'RE ABLE TO EXTRACT FROM 4717 03:44:44,963 --> 03:44:48,700 THE LARGE DATA SETS ON MULTIPLE 4718 03:44:48,700 --> 03:44:51,370 DIMENSIONS QUANTITATIVE 4719 03:44:51,370 --> 03:44:52,304 INFORMATION WITHOUT PRESET 4720 03:44:52,304 --> 03:44:53,639 POSITIONS ABOUT THEIR FUNCTION 4721 03:44:53,639 --> 03:44:57,643 WHATSOEVER. 4722 03:44:57,643 --> 03:45:03,048 AND HOW DO WE DO THIS 4723 03:45:03,048 --> 03:45:03,649 LONGITUDINALLY. 4724 03:45:03,649 --> 03:45:07,486 HERE'S AN EXAMPLE OF A CHILDHOOD 4725 03:45:07,486 --> 03:45:08,954 MEASURE FOR 10 MONTHS. 4726 03:45:08,954 --> 03:45:12,424 SOMETIMES EVERY WEEK AND OFTEN 4727 03:45:12,424 --> 03:45:12,825 DAI 4728 03:45:12,825 --> 03:45:13,125 DAILY. 4729 03:45:13,125 --> 03:45:14,526 LOOK AT THE MASSIVE IMPROVEMENT 4730 03:45:14,526 --> 03:45:17,629 IN THEIR CONTRAST SENSITIVITY 4731 03:45:17,629 --> 03:45:19,631 FUNCTION? 4732 03:45:19,631 --> 03:45:21,300 AND THERE'S THIS BEAUTIFUL CURVE 4733 03:45:21,300 --> 03:45:23,836 AT THAT TIME. 4734 03:45:23,836 --> 03:45:25,637 THIS CHILD AS MANY WE HEARD OF 4735 03:45:25,637 --> 03:45:31,210 AND WILL TALK ABOUT AGAIN HAD 4736 03:45:31,210 --> 03:45:32,578 INCREDIBLE SUCCESS. 4737 03:45:32,578 --> 03:45:36,682 LATENCY, THERE'S A CORRELATION 4738 03:45:36,682 --> 03:45:38,650 BETWEEN THE TWO. 4739 03:45:38,650 --> 03:45:41,253 AND SO FORTH IT DECREASED. 4740 03:45:41,253 --> 03:45:43,355 YOU CAN JUST SEE WHY THESE TWO 4741 03:45:43,355 --> 03:45:44,189 INTERACT SO WELL. 4742 03:45:44,189 --> 03:45:45,324 AND THERE'S OTHER CHANGES THAT 4743 03:45:45,324 --> 03:45:49,027 OCCUR OVER TIME AS WELL. 4744 03:45:49,027 --> 03:45:50,662 AGAIN, WE CAN MEASURE NOT JUST 4745 03:45:50,662 --> 03:45:53,031 ONCE BUT WE CAN MEASURE 4746 03:45:53,031 --> 03:45:53,565 REPEATEDLY. 4747 03:45:53,565 --> 03:45:55,868 AND DO IT QUANTITATIVELY. 4748 03:45:55,868 --> 03:45:58,737 CONCLUSIONS ON THIS ARE AS 4749 03:45:58,737 --> 03:45:58,971 FOLLOWS. 4750 03:45:58,971 --> 03:46:01,640 BETTER MEASURES CAN NOW BE 4751 03:46:01,640 --> 03:46:04,109 OBTAINED FROM TRAUMATIC BRAIN 4752 03:46:04,109 --> 03:46:04,543 INJURY. 4753 03:46:04,543 --> 03:46:07,412 IT'S NOT A PANACEA. 4754 03:46:07,412 --> 03:46:09,648 SOME WE CANNOT MEASURE BUT ON A 4755 03:46:09,648 --> 03:46:11,583 BROADER RANGE WE CAN MEASURE AND 4756 03:46:11,583 --> 03:46:14,219 ALLOWS US TO PUT THEM AND US ALL 4757 03:46:14,219 --> 03:46:15,888 IN THE SAME SCALE. 4758 03:46:15,888 --> 03:46:19,958 NOW WE OFTEN MEASURE ONE WAY FOR 4759 03:46:19,958 --> 03:46:20,526 BRAIN INJURY POPULATION AND 4760 03:46:20,526 --> 03:46:25,531 ANOTHER FOR INDIVIDUALS. 4761 03:46:25,531 --> 03:46:27,165 FUNCTION CAN BE MEASURED 4762 03:46:27,165 --> 03:46:27,533 LONGITUDINALLY. 4763 03:46:27,533 --> 03:46:31,136 THERE'S NO UPPER LIMIT TO THIS. 4764 03:46:31,136 --> 03:46:32,871 WE CAN NOW THE LARGE SCALE DATA 4765 03:46:32,871 --> 03:46:35,340 SETS WHERE WE COULDN'T BEFORE OR 4766 03:46:35,340 --> 03:46:36,542 AT LEAST WE'RE TRYING TO SQUEEZE 4767 03:46:36,542 --> 03:46:37,709 TOO MUCH INFORMATION OUT OF TOO 4768 03:46:37,709 --> 03:46:41,446 SMALL OF A DATA SET AND NOW WE 4769 03:46:41,446 --> 03:46:43,882 CAN HAVE LARGER DATA SETS AND 4770 03:46:43,882 --> 03:46:45,684 HOW THEY INTERACT WITH 4771 03:46:45,684 --> 03:46:51,256 INFORMATION AND WE HEARD A GREAT 4772 03:46:51,256 --> 03:46:59,665 TALK ON AND WE'RE DOING THE 4773 03:46:59,665 --> 03:46:59,932 ANALYSIS. 4774 03:46:59,932 --> 03:47:03,001 THIS IS THE SORT OF THING NOT 4775 03:47:03,001 --> 03:47:07,673 ABLE TO BE DONE BEFORE AND NOW 4776 03:47:07,673 --> 03:47:09,107 WE CAN DO. 4777 03:47:09,107 --> 03:47:11,610 IT HIT SEEMS QUIRKY AND KIND OF 4778 03:47:11,610 --> 03:47:13,345 PERIOD BUT THE KIDS LOVE IT. 4779 03:47:13,345 --> 03:47:16,148 THE KIDS LOVE IT. 4780 03:47:16,148 --> 03:47:18,684 THEY'RE ALL DOING THIS AND IT 4781 03:47:18,684 --> 03:47:22,321 ALSO FACILITATES ENGAGE THE. 4782 03:47:22,321 --> 03:47:27,392 THEY CAN'T DO MACHINE SO JUST IN 4783 03:47:27,392 --> 03:47:28,393 TERMED OF THEIR INVOLVEMENT 4784 03:47:28,393 --> 03:47:32,764 THEY'RE ABLE TO DO ALL KINDS OF 4785 03:47:32,764 --> 03:47:33,165 THINGS. 4786 03:47:33,165 --> 03:47:35,033 PARENTS BEG US FOR THEM TO HAVE 4787 03:47:35,033 --> 03:47:36,835 A WAY TO DO THIS AND THE 4788 03:47:36,835 --> 03:47:41,640 ENGAGEMENT AND REPETITION ARE 4789 03:47:41,640 --> 03:47:49,314 THE INGREDIENTS OF THERAPY AND 4790 03:47:49,314 --> 03:47:56,321 WE CAN LOOK AT REPUTATION AS 4791 03:47:56,321 --> 03:47:56,989 THERAPEUTIC INTERVENTIONS AND WE 4792 03:47:56,989 --> 03:47:59,625 CAN LOOK AT THIS OVER TIME AND 4793 03:47:59,625 --> 03:48:05,631 NOT JUST CHAPERONE RECOVERY ALSO 4794 03:48:05,631 --> 03:48:09,434 FOLLOW IT OVER TIME AND THINK 4795 03:48:09,434 --> 03:48:11,203 IT'S READY FOR DEPLOYMENT AND 4796 03:48:11,203 --> 03:48:16,375 WOULD LOVE TO PARTNER WEDGE 4797 03:48:16,375 --> 03:48:17,175 WITH PEOPLE. 4798 03:48:17,175 --> 03:48:19,378 WE NEED MUCH LARGER DATA SETS 4799 03:48:19,378 --> 03:48:21,980 AND CANNOT ONLY MEASURE VISION 4800 03:48:21,980 --> 03:48:23,649 BUT IF VISION IN CVI WE NEED TO 4801 03:48:23,649 --> 03:48:26,785 MEASURE THIS TO KNOW WHAT WE'RE 4802 03:48:26,785 --> 03:48:32,658 UP AGAINST AND BY CORRELATING 4803 03:48:32,658 --> 03:48:35,427 THE VISUAL DEFICITS OR FUNCTIONS 4804 03:48:35,427 --> 03:48:39,998 WE'LL FIGURE THIS OUT AND 4805 03:48:39,998 --> 03:48:43,602 DICTATE WHAT FORMS IT COMES IN 4806 03:48:43,602 --> 03:48:47,406 AND TRY TO IMPROVE IT. 4807 03:48:47,406 --> 03:48:48,206 THANK YOU VERY MUCH FOR YOUR 4808 03:48:48,206 --> 03:48:48,640 ATTENTION. 4809 03:48:48,640 --> 03:48:52,411 I HAVE A TEAM OF PEOPLE THAT ARE 4810 03:48:52,411 --> 03:48:54,312 FANTASTIC TO DO THIS. 4811 03:48:54,312 --> 03:48:57,649 AND SHE IS UNBELIEVABLY GOOD AT 4812 03:48:57,649 --> 03:49:00,452 GENERATING THE INFORMATION I'VE 4813 03:49:00,452 --> 03:49:02,621 SHOWN YOU IS MY CLINICIAN AND I 4814 03:49:02,621 --> 03:49:03,889 HAVE A FANTASTIC COMPUTER 4815 03:49:03,889 --> 03:49:05,257 SCIENTIST AND SO GRATEFUL FOR 4816 03:49:05,257 --> 03:49:06,992 THE FUNDING WE'VE HAD FOR THIS 4817 03:49:06,992 --> 03:49:08,560 WORK. 4818 03:49:08,560 --> 03:49:11,163 IT WAS A CHANCE TO DO THIS SORT 4819 03:49:11,163 --> 03:49:12,464 OF THING BUT HOPE YOU CAN SEE WE 4820 03:49:12,464 --> 03:49:15,767 HAVE A SYSTEM THAT ALLOWS US TO 4821 03:49:15,767 --> 03:49:19,871 MEASURE FUNCTION IN ACCURACY IN 4822 03:49:19,871 --> 03:49:21,640 WAYS WE COULDN'T HAVE IMAGINED 4823 03:49:21,640 --> 03:49:24,342 BEFORE. 4824 03:49:24,342 --> 03:49:25,277 THANK YOU AGAIN NOR OPPORTUNITY. 4825 03:49:25,277 --> 03:49:26,478 >> THANK YOU, GLEN. 4826 03:49:26,478 --> 03:49:29,614 OUR NEXT SPEAKER IS 4827 03:49:29,614 --> 03:49:32,050 DR. CHRISTINE ROMAN LANTZY 4828 03:49:32,050 --> 03:49:33,652 PROGRAM DIRECTOR AT PEDIATRIC 4829 03:49:33,652 --> 03:49:36,688 VIEW PROGRAM AND CHILDREN'S HOME 4830 03:49:36,688 --> 03:49:39,558 AT LEMIEUX FAMILY CENTER. 4831 03:49:39,558 --> 03:49:43,795 I WAS A PENGUINS FANS AT ONE 4832 03:49:43,795 --> 03:49:45,797 POINT SO MARIEL LEMIEUX, 4833 03:49:45,797 --> 03:49:47,632 DEFINITELY. 4834 03:49:47,632 --> 03:49:50,869 >> THANK YOU. 4835 03:49:50,869 --> 03:49:56,441 IT LOOKS LIKE I'M AT MY ENDING 4836 03:49:56,441 --> 03:49:59,644 TIME AND TELL ME WHEN YOU WANT 4837 03:49:59,644 --> 03:50:01,646 ME DONE AND HONESTLY. 4838 03:50:01,646 --> 03:50:08,687 OKAY. 4839 03:50:08,687 --> 03:50:10,155 ONE THING ABOUT TEACHING 4840 03:50:10,155 --> 03:50:10,822 GRADUATES STUDENT IS YOU LEARN 4841 03:50:10,822 --> 03:50:12,224 TO GO OVER TIME. 4842 03:50:12,224 --> 03:50:17,462 I WILL FINISH ON TIME. 4843 03:50:17,462 --> 03:50:19,798 SO THE CVI RANGE IN 15 MINUTES. 4844 03:50:19,798 --> 03:50:23,168 THIS IS GOING TO WORK. 4845 03:50:23,168 --> 03:50:24,102 IT IS A FUNCTIONAL VISION 4846 03:50:24,102 --> 03:50:27,072 ASSESSMENT FOR INDIVIDUALS WIN 4847 03:50:27,072 --> 03:50:33,345 CVI AND THE BACK STORY TO THE 4848 03:50:33,345 --> 03:50:35,714 CVI RANGE WAS DEVELOPED BASED ON 4849 03:50:35,714 --> 03:50:37,516 PARENTS INPUT TO ME ABOUT WHAT 4850 03:50:37,516 --> 03:50:38,316 THEY NEEDED. 4851 03:50:38,316 --> 03:50:40,051 I WOULD TALK ABOUT THE CVI BEING 4852 03:50:40,051 --> 03:50:47,459 ON A CONTINUUM AND DESCRIBE 4853 03:50:47,459 --> 03:50:52,164 ARBITRARILY WHAT I THOUGHT OF 4854 03:50:52,164 --> 03:50:53,632 DEGREE OF FUNCTIONAL VISION AND 4855 03:50:53,632 --> 03:50:56,101 PARENTS SAID TO ME WHAT DOES 4856 03:50:56,101 --> 03:51:06,645 THAT MEAN AND A SAID I SAID SO. 4857 03:51:11,683 --> 03:51:13,652 IT'S USED FOR INDIVIDUALS 9 4858 03:51:13,652 --> 03:51:16,588 MONTHS OF AGE TO SCHOOL AGE NOT 4859 03:51:16,588 --> 03:51:18,824 ON THE PRESENCE OR ABSENCE OF 4860 03:51:18,824 --> 03:51:21,626 ADDITIONAL DISABILITIES. 4861 03:51:21,626 --> 03:51:25,564 I CAN USE IT WITH GIFTED 4862 03:51:25,564 --> 03:51:27,332 ABILITIES TO THOSE STRUGGLING TO 4863 03:51:27,332 --> 03:51:27,532 LEARN. 4864 03:51:27,532 --> 03:51:29,634 IT'S NOT ASSOCIATED WITH 4865 03:51:29,634 --> 03:51:30,769 COGNITIVE COMPETENCE BECAUSE WE 4866 03:51:30,769 --> 03:51:35,507 CAN'T REALLY GET AN ACCURATE 4867 03:51:35,507 --> 03:51:37,642 I.Q. SCORE IN MOST INDIVIDUALS 4868 03:51:37,642 --> 03:51:43,381 WITH CVI DUE TO THE INHERENT 4869 03:51:43,381 --> 03:51:44,382 TESTING AND ASSOCIATED WITH THE 4870 03:51:44,382 --> 03:51:48,320 ABILITY TO TALK OR WALK AND 4871 03:51:48,320 --> 03:51:50,856 DRIVEN BY A SERIES OF THINGS WE 4872 03:51:50,856 --> 03:51:54,893 DO AND WITH ALWAYS THE GOAL IN 4873 03:51:54,893 --> 03:52:01,633 MIND OF COMPLYING WITH THE 4874 03:52:01,633 --> 03:52:05,637 STRUCTURE. 4875 03:52:05,637 --> 03:52:08,440 AND HE CAN SOLVE THE RUBIK'S 4876 03:52:08,440 --> 03:52:11,610 CUBE IN ABOUT TWO MINUTES. 4877 03:52:11,610 --> 03:52:17,816 AND AS YOU SEE HERE IT PLACES 4878 03:52:17,816 --> 03:52:21,553 THE CHILD'S VISUAL FUNCTION AND 4879 03:52:21,553 --> 03:52:24,389 WE'RE TALKING ABOUT THE DEGREE 4880 03:52:24,389 --> 03:52:26,558 OF FUNCTIONAL VISION -- WE'RE 4881 03:52:26,558 --> 03:52:27,792 NOT QUALIFYING THE CHILD AS 4882 03:52:27,792 --> 03:52:28,460 SOMETHING. 4883 03:52:28,460 --> 03:52:30,996 IN PHASE 1 THE CHILD IS 4884 03:52:30,996 --> 03:52:33,598 PRIMARILY USING DORSAL STREAM 4885 03:52:33,598 --> 03:52:33,832 VISION. 4886 03:52:33,832 --> 03:52:35,634 THEY PRIMARILY NOTICE THINGS 4887 03:52:35,634 --> 03:52:36,301 THAT MOVE. 4888 03:52:36,301 --> 03:52:41,473 THINGS THAT HAVE COLOR. 4889 03:52:41,473 --> 03:52:44,175 THINGS THAT MAY BE FORM WHITE 4890 03:52:44,175 --> 03:52:44,976 SOMETIMES BUT NOT CONSISTENT USE 4891 03:52:44,976 --> 03:52:47,512 OF VISION AND IT'S COMPLETELY 4892 03:52:47,512 --> 03:52:49,948 SEPARATE FROM HOW THIS CHILD 4893 03:52:49,948 --> 03:52:52,584 THINKS, WHAT THEIR ABILITIES ARE 4894 03:52:52,584 --> 03:52:55,453 ACADEMICALLY AND LANGUAGE WISE. 4895 03:52:55,453 --> 03:52:57,022 THESE CERTAIN REQUIRE 4896 03:52:57,022 --> 03:52:58,924 SIGNIFICANT CONTROL OF THEIR 4897 03:52:58,924 --> 03:52:59,624 ENVIRONMENT. 4898 03:52:59,624 --> 03:53:02,928 IT'S IMPORTANT TO KNOW THIS 4899 03:53:02,928 --> 03:53:04,729 BECAUSE ULTIMATELY THIS SCORE IS 4900 03:53:04,729 --> 03:53:09,334 USED FOR THE MAJOR PURPOSE OF 4901 03:53:09,334 --> 03:53:09,768 DRIVING INSTRUCTION. 4902 03:53:09,768 --> 03:53:11,636 IF THE INTERVENTIONS DON'T MATCH 4903 03:53:11,636 --> 03:53:14,105 THAT CHILD'S LEVEL OF FUNCTIONAL 4904 03:53:14,105 --> 03:53:15,874 VISION HE DID NOTHING MORE THAT 4905 03:53:15,874 --> 03:53:17,075 BE ACT RANDOMLY AND RANDOM I 4906 03:53:17,075 --> 03:53:27,385 DON'T THINK WORKS. 4907 03:53:39,230 --> 03:53:49,641 LOOKING IS NOT INTERPRETING. 4908 03:54:05,690 --> 03:54:13,398 AND THEY HAVE 7 TO 10 AND I HAVE 4909 03:54:13,398 --> 03:54:18,470 NOT MET THE INDIVIDUAL WHO 4910 03:54:18,470 --> 03:54:21,072 SCORED 10. 4911 03:54:21,072 --> 03:54:25,110 THIS PERSON PROBABLY REQUIRES 4912 03:54:25,110 --> 03:54:26,144 THE MOST SUPPORT BECAUSE THEIR 4913 03:54:26,144 --> 03:54:28,480 VISION IS ON ALL DAY AND HAVE TO 4914 03:54:28,480 --> 03:54:29,581 ACCOMMODATE THEIR NEED FOR 4915 03:54:29,581 --> 03:54:30,815 ADAPTATION AND SPECIAL USE OF 4916 03:54:30,815 --> 03:54:36,788 LANGUAGE AND SO FORTHAL FOURTH 4917 03:54:36,788 --> 03:54:41,626 ALL DAY LONG AND THEY LOOK AT 4918 03:54:41,626 --> 03:54:42,627 INTERVIEW DIRECT ASSESSMENT. 4919 03:54:42,627 --> 03:54:43,862 THE PAPER DOESN'T MATTER UNTIL 4920 03:54:43,862 --> 03:54:45,630 YOU GET EVERYTHING GATHERED AND 4921 03:54:45,630 --> 03:54:48,700 THAT IS GATHERED THROUGH THE 4922 03:54:48,700 --> 03:54:49,667 INTERVIEW AND OBSERVATION AND 4923 03:54:49,667 --> 03:54:51,403 DIRECT ASSESSMENT PROCESSES. 4924 03:54:51,403 --> 03:54:53,571 IT'S IMPORTANT FIRST OF ALL TO 4925 03:54:53,571 --> 03:54:56,374 MENTION THE INTERVIEW WAS MY 4926 03:54:56,374 --> 03:54:57,876 DOCTORAL RESEARCH IN WHICH 25 4927 03:54:57,876 --> 03:54:59,210 QUESTIONS ARE ASKED AND THERE'S 4928 03:54:59,210 --> 03:55:01,646 A SCORING GUIDE TO SHOW WHETHER 4929 03:55:01,646 --> 03:55:02,680 THE SCORE -- THE APPARENT 4930 03:55:02,680 --> 03:55:05,183 RESPONSE IS A YES OR NO FOR CVI. 4931 03:55:05,183 --> 03:55:07,318 IT'S ALSO IMPORTANT TO SAY IT'S 4932 03:55:07,318 --> 03:55:08,920 NOT A WRITTEN INVENTORY BECAUSE 4933 03:55:08,920 --> 03:55:09,788 PEOPLE ANSWER DIFFERENTLY WHEN 4934 03:55:09,788 --> 03:55:13,391 YOU ASK THEM FACE TO FACE WHEN 4935 03:55:13,391 --> 03:55:16,494 WHEN YOU ASK THEM TO WRITE 4936 03:55:16,494 --> 03:55:16,761 SOMETHING. 4937 03:55:16,761 --> 03:55:18,396 I WANT TO SEE WHAT HAPPENS IN 4938 03:55:18,396 --> 03:55:20,465 YOUR CLASSROOM OR AS YOU WALK 4939 03:55:20,465 --> 03:55:22,834 THROUGH THE HALLS OF OUR 4940 03:55:22,834 --> 03:55:26,204 HOSPITAL AND WHEN WE DON'T PUT 4941 03:55:26,204 --> 03:55:27,072 CONTROLS IN AND DIRECT 4942 03:55:27,072 --> 03:55:29,607 ASSESSMENT IS IN THE CONTROLLED 4943 03:55:29,607 --> 03:55:39,818 ENVIRONMENT. 4944 03:55:40,385 --> 03:55:42,587 FIRST THE ACROSS CHARACTERISTIC 4945 03:55:42,587 --> 03:55:46,257 MENL ODDS AND THERE'S STATEMENTS 4946 03:55:46,257 --> 03:55:48,393 AND BEHAVIORS THAT INCORPORATE 4947 03:55:48,393 --> 03:55:50,562 ONE OR MORE OF THE 4948 03:55:50,562 --> 03:55:57,602 CHARACTERISTIC REPRESENTATIONS. 4949 03:55:57,602 --> 03:56:02,073 THIS SHOWS A SCHEMATIC OF WHAT 4950 03:56:02,073 --> 03:56:05,610 THE SCORING MATRIX LOOKS IN THE 4951 03:56:05,610 --> 03:56:09,547 ACROSS CHARACTERISTICS METHOD 4952 03:56:09,547 --> 03:56:11,182 AFTER OBSERVATION AND ASSESSMENT 4953 03:56:11,182 --> 03:56:13,651 AND WHAT DID I USE TO SCORE THIS 4954 03:56:13,651 --> 03:56:15,286 AND SCORE KWL THAT STATEMENT IS 4955 03:56:15,286 --> 03:56:16,855 RESOLVED OR TRUE OR PARTIALLY 4956 03:56:16,855 --> 03:56:17,622 TRUE OR THE CHILD'S NOT THERE 4957 03:56:17,622 --> 03:56:20,959 YET. 4958 03:56:20,959 --> 03:56:22,093 IT CONTINUES TO ADVANCE. 4959 03:56:22,093 --> 03:56:25,497 THIS IS NOT BASED ON A 4960 03:56:25,497 --> 03:56:26,498 DEVELOPMENTAL SEQUENCE OF THAT 4961 03:56:26,498 --> 03:56:31,603 CHILD'S OVER ALL DEVELOPMENT BUT 4962 03:56:31,603 --> 03:56:34,806 BASED ON FUNCTIONAL, VISUAL 4963 03:56:34,806 --> 03:56:35,373 SKILLS. 4964 03:56:35,373 --> 03:56:36,508 YOU'LL SEE HAS A FAVORITE COLOR 4965 03:56:36,508 --> 03:56:38,643 OR VISUALLY FIXATES IN THE 4966 03:56:38,643 --> 03:56:40,245 ENVIRONMENT CONTROL. 4967 03:56:40,245 --> 03:56:41,312 ALTHOUGH STATEMENTS MEANS WE 4968 03:56:41,312 --> 03:56:42,480 SCORE THOSE AFTER WE GATHER THE 4969 03:56:42,480 --> 03:56:43,748 DATA AND GOES FROM FIVE TO SIX 4970 03:56:43,748 --> 03:56:46,751 AND SEVEN TO EIGHT AND NINE TO 4971 03:56:46,751 --> 03:56:49,454 TEN THE HIGHEST LEVEL OF VISUAL 4972 03:56:49,454 --> 03:56:51,823 FUNCTION AND LOOK FOR A CEILING 4973 03:56:51,823 --> 03:56:53,525 AFFECT AND DRIVE THE SCORE FOR 4974 03:56:53,525 --> 03:56:54,759 RATING ONE. 4975 03:56:54,759 --> 03:56:57,629 RATING TWO IS WITHIN 4976 03:56:57,629 --> 03:56:58,196 CHARACTERISTICS. 4977 03:56:58,196 --> 03:56:59,697 TO STRENGTHEN THE TEST WE HAVE 4978 03:56:59,697 --> 03:57:01,666 TO ASK THE SAME QUESTION IN 4979 03:57:01,666 --> 03:57:03,835 ANOTHER WAY AND USING THE 4980 03:57:03,835 --> 03:57:09,374 OBSERVATION IN A DIRECT 4981 03:57:09,374 --> 03:57:11,309 ASSESSMENT AND BASED ON WEATHER 4982 03:57:11,309 --> 03:57:14,812 THE CHARACTERISTIC WITHIN EACH 4983 03:57:14,812 --> 03:57:17,282 CHARACTERISTIC AND THERE'S 10 4984 03:57:17,282 --> 03:57:20,885 LISTED HERE WITH CHARACTERISTICS 4985 03:57:20,885 --> 03:57:26,958 AND WE LOOK AT THE EXTENT OF THE 4986 03:57:26,958 --> 03:57:29,327 AFFECT OF CHARACTERISTIC AND THE 4987 03:57:29,327 --> 03:57:31,729 CHILD RESPONDS TO THIS 4988 03:57:31,729 --> 03:57:34,432 CHARACTERISTIC AND NOT THEIR AGE 4989 03:57:34,432 --> 03:57:34,732 MATES. 4990 03:57:34,732 --> 03:57:37,569 THOSE VALUES ARE THEN ADDED AND 4991 03:57:37,569 --> 03:57:43,608 SOME BECOMES THE SECOND SCORE. 4992 03:57:43,608 --> 03:57:45,610 I PLOTTED ON THE NUMBER LINE AND 4993 03:57:45,610 --> 03:57:46,077 RANGE. 4994 03:57:46,077 --> 03:57:51,149 IT'S NOT A POINT IN TIME BUT THE 4995 03:57:51,149 --> 03:57:53,651 SCORES ARE USED TO DESCRIBE THE 4996 03:57:53,651 --> 03:57:55,019 IMPACT OF CVI. 4997 03:57:55,019 --> 03:57:57,088 THE SCORES CAN ALSO THEN BE USED 4998 03:57:57,088 --> 03:57:59,290 EDUCATIONALLY TO DESCRIBE THE 4999 03:57:59,290 --> 03:58:00,658 CHILD'S FUNCTION OR CURRENT 5000 03:58:00,658 --> 03:58:02,393 LEVEL OF VISUAL FUNCTION. 5001 03:58:02,393 --> 03:58:03,695 ANYTHING SCORED IS A PLUS IS 5002 03:58:03,695 --> 03:58:05,630 DESCRIBING HOW THE CHILD IS 5003 03:58:05,630 --> 03:58:08,132 USING THEIR VISION NOW AND SCORE 5004 03:58:08,132 --> 03:58:09,934 RATING 2 THE SECOND ONE WITHIN 5005 03:58:09,934 --> 03:58:11,836 THE CHARACTERISTICS ARE USED TO 5006 03:58:11,836 --> 03:58:14,205 DESCRIBE ACCOMMODATIONS. 5007 03:58:14,205 --> 03:58:16,074 ANYTHING THAT IS STILL ACTIVELY 5008 03:58:16,074 --> 03:58:18,743 AFFECTING THE STUDENT SHOULD BE 5009 03:58:18,743 --> 03:58:24,849 IN THEIR IEP AS AN 5010 03:58:24,849 --> 03:58:25,183 ACCOMMODATION. 5011 03:58:25,183 --> 03:58:30,888 THERE'S A TRANSLATION DIRECTLY 5012 03:58:30,888 --> 03:58:31,923 INTO SERVICES. 5013 03:58:31,923 --> 03:58:33,858 AND TO SHOW YOU WITHOUT ANY 5014 03:58:33,858 --> 03:58:34,926 DETAIL THERE'S CONSIDERATION 5015 03:58:34,926 --> 03:58:38,096 WHEN THE CHILD WITH CVI HAS AN 5016 03:58:38,096 --> 03:58:42,667 OKLAHOMA -- OCULAR CONDITION 5017 03:58:42,667 --> 03:58:44,202 BECAUSE THE WAY YOU SCORE THE 5018 03:58:44,202 --> 03:58:45,536 STATEMENTS TO LOOK AT WHEN 5019 03:58:45,536 --> 03:58:47,705 THERE'S A CO-EXISTING OCULAR 5020 03:58:47,705 --> 03:58:50,441 CONCERN AND DON'T KNOW EXACTLY 5021 03:58:50,441 --> 03:58:53,745 IF THE CHILD IS IN PHASE 1 5022 03:58:53,745 --> 03:58:54,545 WHETHER IT'S DUE TO CVI OR 5023 03:58:54,545 --> 03:59:04,789 OCULAR ISSUE. 5024 03:59:10,762 --> 03:59:14,932 WE HAVE TO GO ON WHAT WE SEE BUT 5025 03:59:14,932 --> 03:59:16,367 CAN'T DECLARE THEY CAN'T 5026 03:59:16,367 --> 03:59:18,169 IDENTIFY THE IMAGE BECAUSE OF 5027 03:59:18,169 --> 03:59:20,471 THE OPTIC NERVE OR CVI AND AS 5028 03:59:20,471 --> 03:59:22,206 THE CHILD IMPROVE WE GET A 5029 03:59:22,206 --> 03:59:23,508 PICTURE OF WHAT IS MOST 5030 03:59:23,508 --> 03:59:24,008 IMPACTFUL AND PROGRAM 5031 03:59:24,008 --> 03:59:34,218 ACCORDINGLY. 5032 03:59:35,119 --> 03:59:36,254 THERE'S INDIVIDUALS WHO SCORE 7 5033 03:59:36,254 --> 03:59:39,557 TO 10 AND WHAT HAPPENS WEN WHEN 5034 03:59:39,557 --> 03:59:41,426 THE VISION IS ON ALL DAY AND 5035 03:59:41,426 --> 03:59:45,630 THIS BREAKS THEM INTO MANY MANY 5036 03:59:45,630 --> 03:59:51,669 MORE COMPONENTS. 5037 03:59:51,669 --> 03:59:56,007 55 ITEMS TO TAKE THINGS INTO 5038 03:59:56,007 --> 03:59:56,541 SMALLER COMPONENTS. 5039 03:59:56,541 --> 03:59:59,977 THE USE OF RANGE AND SORTED 5040 03:59:59,977 --> 04:00:01,979 MATERIALS DRIVE INSTRUCTION AND 5041 04:00:01,979 --> 04:00:03,281 ACCESS TO MATERIALS, 5042 04:00:03,281 --> 04:00:05,650 ENVIRONMENTS, METHODS AND 5043 04:00:05,650 --> 04:00:15,827 PARTNERS. 5044 04:00:16,961 --> 04:00:18,329 THIS IS THE QUALITY OF THE 5045 04:00:18,329 --> 04:00:23,634 SERVICE AND HOW WELL IS THAT 5046 04:00:23,634 --> 04:00:28,339 SERVICE BEING DRIVEN BY ACCURATE 5047 04:00:28,339 --> 04:00:30,375 DESCRIPTIONS AND THAT'S 5048 04:00:30,375 --> 04:00:30,641 CRITICAL. 5049 04:00:30,641 --> 04:00:33,111 THE RANGE SCORES ARE CRITICAL TO 5050 04:00:33,111 --> 04:00:35,079 DESIGN INSTRUCTION TO MEASURE 5051 04:00:35,079 --> 04:00:38,282 IMPROVEMENTS IN FUNCTIONAL 5052 04:00:38,282 --> 04:00:39,650 VISION AND SEE IF THERE'S 5053 04:00:39,650 --> 04:00:41,152 CHANGES BECAUSE THERE'S AN 5054 04:00:41,152 --> 04:00:42,987 EXPECTATION OF IMPROVING VISION 5055 04:00:42,987 --> 04:00:45,223 IN INDIVIDUALS WITH CVI AND ALSO 5056 04:00:45,223 --> 04:00:47,658 TELLS US WHETHER OUR 5057 04:00:47,658 --> 04:00:52,730 INTERVENTIONS ARE EFFECTIVE. 5058 04:00:52,730 --> 04:00:54,532 THE CHILD SCORES 5 AND NO OTHER 5059 04:00:54,532 --> 04:00:57,301 REASON CAN EXPLAIN THIS, THEN I 5060 04:00:57,301 --> 04:00:58,936 MAY WANT TO TAKE A LOOK AT MY 5061 04:00:58,936 --> 04:01:01,038 INSTRUCTION AND SAY IS THERE 5062 04:01:01,038 --> 04:01:02,340 SOMETHING I CAN DO BETTER THAT 5063 04:01:02,340 --> 04:01:05,243 KILL HELP THIS CHILD ACCESS 5064 04:01:05,243 --> 04:01:06,477 THEIR VISUAL WORLD MORE. 5065 04:01:06,477 --> 04:01:14,752 IT CAN BE USED FOR RESEARCH AND 5066 04:01:14,752 --> 04:01:16,988 SEALS TO BE MEANINGFUL FOR 5067 04:01:16,988 --> 04:01:18,823 PARENTS AND WHEN IT'S NOT 5068 04:01:18,823 --> 04:01:19,991 CONDUCTED WITH FIDELITY ALL I 5069 04:01:19,991 --> 04:01:22,427 CAN DO IS SAY I'M SO SORRY IF 5070 04:01:22,427 --> 04:01:24,896 YOU OR SOMEONE YOU KNOW HAD 5071 04:01:24,896 --> 04:01:25,930 ARRANGE CONDUCTED AND IT WASN'T 5072 04:01:25,930 --> 04:01:35,473 DONE CORRECTLY. 5073 04:01:35,473 --> 04:01:38,776 AND IT PROVIDES A COMMON 5074 04:01:38,776 --> 04:01:41,212 LANGUAGE AND THE INDIVIDUAL 5075 04:01:41,212 --> 04:01:42,847 SEEMS TO BE IN PHASE 2 CVI AND 5076 04:01:42,847 --> 04:01:45,416 WE GET THE SENSE THEY'RE USING 5077 04:01:45,416 --> 04:01:47,318 THEIR VISION AND PROBABLY USING 5078 04:01:47,318 --> 04:01:49,387 EYE TO EYE OBJECT AND IF I SAY 5079 04:01:49,387 --> 04:01:51,622 WHAT MATERIALS ARE YOU USING 5080 04:01:51,622 --> 04:01:52,957 WITH THE STUDENT AND THEY SAY I 5081 04:01:52,957 --> 04:01:55,827 HAVE PICTURE CARDS AND DOESN'T 5082 04:01:55,827 --> 04:01:57,628 SEEM TO BEHAVE DURING SPEECH 5083 04:01:57,628 --> 04:01:57,862 THERAPY. 5084 04:01:57,862 --> 04:02:03,968 HE'S AT THE END OF PHASE 1 AND 5085 04:02:03,968 --> 04:02:06,471 AT THIS POINT HE'S NOT ACCESSING 5086 04:02:06,471 --> 04:02:07,071 THE INFORMATION. 5087 04:02:07,071 --> 04:02:09,140 PARENT DEPEND ON THE SCORES TO 5088 04:02:09,140 --> 04:02:10,908 MONITOR THEIR CHILD'S FUNCTIONAL 5089 04:02:10,908 --> 04:02:12,510 VISION STATUS AND USE THEM TO 5090 04:02:12,510 --> 04:02:14,512 CONSIDER THE APPROPRIATENESS OF 5091 04:02:14,512 --> 04:02:17,648 ACCOMMODATION THAT PERMIT 5092 04:02:17,648 --> 04:02:18,216 ACCESS. 5093 04:02:18,216 --> 04:02:21,619 PARENTS LIKE TO SEEK A METHOD 5094 04:02:21,619 --> 04:02:24,589 THAT VALIDATES THEIR OWN 5095 04:02:24,589 --> 04:02:25,623 PERCEPTIONS OF THEIR CHILD. 5096 04:02:25,623 --> 04:02:28,993 PARENTS HAVE TOLD ME THEY'VE HAD 5097 04:02:28,993 --> 04:02:31,929 EMOTIONAL MOMENTS AFTER THEIR 5098 04:02:31,929 --> 04:02:35,399 FIRST CVI RANGE BECAUSE THEY 5099 04:02:35,399 --> 04:02:36,267 FELT LIKE SOMEONE KNEW THEIR 5100 04:02:36,267 --> 04:02:37,401 CHILD THOUGH THEY NEVER MET THEM 5101 04:02:37,401 --> 04:02:38,503 BEFORE IT WAS BECAUSE THEY KNEW 5102 04:02:38,503 --> 04:02:40,037 THE CHARACTERISTICS. 5103 04:02:40,037 --> 04:02:42,373 WE EXPECT THE CVI SCORES TO BE A 5104 04:02:42,373 --> 04:02:44,175 SUPPORT IN OTHER TYPE OF 5105 04:02:44,175 --> 04:02:45,042 EVALUATION. 5106 04:02:45,042 --> 04:02:46,511 IT HELPS GUIDE WHAT OTHER KINDS 5107 04:02:46,511 --> 04:02:48,513 OF TESTING MAY BE CONDUCTED WITH 5108 04:02:48,513 --> 04:02:49,647 THIS CHILD AND WHETHER THOSE 5109 04:02:49,647 --> 04:02:51,315 THINGS ARE TRULY ACCESSIBLE FOR 5110 04:02:51,315 --> 04:02:54,919 THE CHILD BEING TESTED. 5111 04:02:54,919 --> 04:02:56,721 AS MENTIONED A FEW TIMES TODAY, 5112 04:02:56,721 --> 04:03:00,791 THOUGH THERE WAS A STUDY 5113 04:03:00,791 --> 04:03:03,094 PUBLISHED IN 2010. 5114 04:03:03,094 --> 04:03:04,428 THERE WAS A CERTAIN INDIVIDUAL 5115 04:03:04,428 --> 04:03:06,464 WHO THOUGHT A MORE RIGOROUS 5116 04:03:06,464 --> 04:03:08,933 APPROACH TO VALIDATING THE CVI 5117 04:03:08,933 --> 04:03:10,968 RANGE WOULD BE A GOOD THING AND 5118 04:03:10,968 --> 04:03:12,203 THAT'S HAPPENING AND I'M HONORED 5119 04:03:12,203 --> 04:03:15,706 TO BE PART OF THAT STUDY. 5120 04:03:15,706 --> 04:03:16,908 DON'T KNOW WHAT THE DATA LOOKS 5121 04:03:16,908 --> 04:03:17,542 LIKE BECAUSE THEY'RE NOT TELLING 5122 04:03:17,542 --> 04:03:22,013 ME. 5123 04:03:22,013 --> 04:03:24,282 I WANTED TO SHARE DATA FROM THE 5124 04:03:24,282 --> 04:03:25,716 BRIDGE SCHOOL AND MY 5125 04:03:25,716 --> 04:03:27,885 MISREPRESENT THIS SPEAK UP, BUT 5126 04:03:27,885 --> 04:03:31,355 THEY LOOKED RETROSPECTIVELY AT 5127 04:03:31,355 --> 04:03:35,560 12 CHILDREN WHO WEREN'T REALLY 5128 04:03:35,560 --> 04:03:37,628 BEING TESTED USING THE CVI RANGE 5129 04:03:37,628 --> 04:03:39,630 AND HAD RANDOM APPROACH. 5130 04:03:39,630 --> 04:03:43,935 NOT TO EDUCATION BUT TO THEIR 5131 04:03:43,935 --> 04:03:45,603 FUNCTIONAL VISION AND BEGAN 5132 04:03:45,603 --> 04:03:47,004 KEEPING DATA AND KEEPING TRACK 5133 04:03:47,004 --> 04:03:49,073 OF THE ACCOMMODATIONS AND BEING 5134 04:03:49,073 --> 04:03:51,142 PRECISE ABOUT WHAT THEY DID AND 5135 04:03:51,142 --> 04:03:53,044 FOUND ALL THE CHILDREN IN THE 5136 04:03:53,044 --> 04:03:54,445 GROUP THEIR LEVEL OF FUNCTIONAL 5137 04:03:54,445 --> 04:03:57,014 VISION IMPROVED AS MEASURED BY 5138 04:03:57,014 --> 04:03:58,149 THE CVI RANGE. 5139 04:03:58,149 --> 04:03:58,983 APPROVED AT DIFFERENT RATES. 5140 04:03:58,983 --> 04:04:02,353 THE MOST DRAMATIC RANGE WERE FOR 5141 04:04:02,353 --> 04:04:04,388 INDIVIDUALS IN PHASE 1 AND SO 5142 04:04:04,388 --> 04:04:04,589 FORTH. 5143 04:04:04,589 --> 04:04:06,958 FURTHER ANALYSIS OF COURSE DOWN 5144 04:04:06,958 --> 04:04:07,458 THE ROAD. 5145 04:04:07,458 --> 04:04:09,627 AND ALSO THERE WERE CHANGES IN 5146 04:04:09,627 --> 04:04:11,662 FUNCTIONAL VISION OVER TIME THAT 5147 04:04:11,662 --> 04:04:12,997 WERE ASSOCIATED WITH 5148 04:04:12,997 --> 04:04:14,332 COMMUNICATION AND LANGUAGE WHICH 5149 04:04:14,332 --> 04:04:15,967 IS HUGE. 5150 04:04:15,967 --> 04:04:17,635 AND IF WE KNOW ANYTHING ABOUT 5151 04:04:17,635 --> 04:04:20,538 THE CVI RANGE OR WORKING WITH 5152 04:04:20,538 --> 04:04:23,107 INDIVIDUALS AT CVI I'LL SAY IT 5153 04:04:23,107 --> 04:04:24,475 AGAIN, THINGS CAN BE SEEN BUT 5154 04:04:24,475 --> 04:04:28,446 NOT NECESSARILY INTERPRETED. 5155 04:04:28,446 --> 04:04:29,080 LANGUAGE IS EVERYTHING AND IF 5156 04:04:29,080 --> 04:04:31,782 YOU DON'T HAVE LANGUAGE, YOU 5157 04:04:31,782 --> 04:04:33,317 CAN'T SEE. 5158 04:04:33,317 --> 04:04:34,852 LANGUAGE IS THE DOOR OPENS UP 5159 04:04:34,852 --> 04:04:36,687 THE WORLD FOR PEOPLE WITH CVI 5160 04:04:36,687 --> 04:04:38,856 AND THEN THE ACCOMMODATIONS WE 5161 04:04:38,856 --> 04:04:41,325 PROVIDE THEM TO HELP THEM 5162 04:04:41,325 --> 04:04:43,527 VISUALLY ACTUALLY PERCEIVE THE 5163 04:04:43,527 --> 04:04:45,997 THING WE'RE TALKING TO THEM 5164 04:04:45,997 --> 04:04:47,431 ABOUT IS THE PARTNER. 5165 04:04:47,431 --> 04:04:50,201 THIS IS HUGE THAT LANGUAGE AND 5166 04:04:50,201 --> 04:04:51,769 COMMUNICATION IMPROVING OVER 5167 04:04:51,769 --> 04:04:54,939 TIME IN MATERIALS OF SOCIAL 5168 04:04:54,939 --> 04:04:56,173 LINGUISTIC AND OPERATIONAL 5169 04:04:56,173 --> 04:04:57,241 FREQUENCIES AND THOSE ARE 5170 04:04:57,241 --> 04:04:57,608 PUBLISHED DATA. 5171 04:04:57,608 --> 04:05:07,785 I DID IT. 5172 04:05:10,021 --> 04:05:11,188 THANK YOU SO MUCH. 5173 04:05:11,188 --> 04:05:15,359 >> OUR LAST TWO PRESENTATIONS 5174 04:05:15,359 --> 04:05:15,893 PERF 5175 04:05:15,893 --> 04:05:17,094 ARE RECORDED AND THE NEXT 5176 04:05:17,094 --> 04:05:18,262 PRESENTER IS DIRECTOR OF 5177 04:05:18,262 --> 04:05:21,365 DEVELOPMENT AND RESEARCH AT THE 5178 04:05:21,365 --> 04:05:23,634 CVI CENTER PERKINS SCHOOL NOR 5179 04:05:23,634 --> 04:05:27,171 BLIND SPEAKING THE FUNCTIONAL 5180 04:05:27,171 --> 04:05:33,477 VISION ASSESSMENT, MR. MAZE YLL 5181 04:05:33,477 --> 04:05:35,946 WAS KIND ENOUGH TO RECORD HER 5182 04:05:35,946 --> 04:05:37,882 PRESENTATION AFTER FALLING ILL 5183 04:05:37,882 --> 04:05:48,426 WHICH WE'LL WATCH TOGETHER NOW. 5184 04:06:22,159 --> 04:06:23,661 >> I COULDN'T BE IN THERE PERSON 5185 04:06:23,661 --> 04:06:25,763 BUT WANTED TO SHARE A LITTLE BIT 5186 04:06:25,763 --> 04:06:29,633 ABOUT OUR CVI PROTOCOL PLATFORM. 5187 04:06:29,633 --> 04:06:31,402 SO FIRST, I'LL JUST DISCUSS 5188 04:06:31,402 --> 04:06:32,536 ABOUT THE DEVELOPMENT OF THE 5189 04:06:32,536 --> 04:06:35,406 VISUAL BEHAVIORS, HOW THAT 5190 04:06:35,406 --> 04:06:38,909 CREATED A PERKINS PROTOCOL ON 5191 04:06:38,909 --> 04:06:43,347 CAMPUS AND HOW IT HAS NOW BECOME 5192 04:06:43,347 --> 04:06:45,182 A DIGITAL PLATFORM TO BE 5193 04:06:45,182 --> 04:06:47,485 RELEASED IN JANUARY. 5194 04:06:47,485 --> 04:06:52,590 SO AT PERKINS WE ARE VERY LUCKY 5195 04:06:52,590 --> 04:06:54,158 BECAUSE WE HAVE A LEARNING LAB 5196 04:06:54,158 --> 04:07:03,768 OF CHILDREN WIN WITH CVI AND 5197 04:07:03,768 --> 04:07:05,102 OUR INFORMATION GROWN WITH YOU 5198 04:07:05,102 --> 04:07:07,872 AND OUR FAMILIES AND STUDENTS 5199 04:07:07,872 --> 04:07:08,139 OURSELVES. 5200 04:07:08,139 --> 04:07:11,342 AND PEOPLE WITH CVI DISPLAY MANY 5201 04:07:11,342 --> 04:07:13,644 MANY VISUAL BEHAVIORS AND 5202 04:07:13,644 --> 04:07:16,781 TRAITS. 5203 04:07:16,781 --> 04:07:22,720 EACH BRAIN IS REALLY EXPRESSED 5204 04:07:22,720 --> 04:07:23,921 DIFFERENTLY AND IT'S THROUGH 5205 04:07:23,921 --> 04:07:25,222 COLLABORATION AND INDIVIDUALS 5206 04:07:25,222 --> 04:07:26,791 WITH CVI ON CAMPUS THAT'S THE 5207 04:07:26,791 --> 04:07:29,627 KEY TO OUR INFORMATION OF THE 5208 04:07:29,627 --> 04:07:31,095 VISUAL BEHAVIORS OF THE 5209 04:07:31,095 --> 04:07:31,762 FUNCTIONAL VISION OF THE CHILD 5210 04:07:31,762 --> 04:07:34,498 AND CO-EXISTING OCULAR 5211 04:07:34,498 --> 04:07:37,134 CONDITIONS AND VERY IMPORTANTLY 5212 04:07:37,134 --> 04:07:38,469 THEIR COMPENSATORY SKILLS. 5213 04:07:38,469 --> 04:07:43,073 WE KNOW CVI IS LIFE LONG. 5214 04:07:43,073 --> 04:07:45,409 MOST PEOPLE WITH CVI WE'VE COME 5215 04:07:45,409 --> 04:07:47,478 TO HAVE CO-EXISTING OCULAR 5216 04:07:47,478 --> 04:07:47,778 CONDITIONS. 5217 04:07:47,778 --> 04:07:49,180 WE'VE HAD A WONDERFUL 5218 04:07:49,180 --> 04:07:51,415 PARTNERSHIP WITH THE LOW-VISION 5219 04:07:51,415 --> 04:07:56,654 CLINIC AND BARRY AND NICOLE ARE 5220 04:07:56,654 --> 04:08:00,825 THERE WITH YOU TODAY AND AND 5221 04:08:00,825 --> 04:08:11,368 PULLED AMLIOPIA AND DISSTAGMUS 5222 04:08:11,368 --> 04:08:12,002 AND REFLECTIVE ERRORS THAT NEED 5223 04:08:12,002 --> 04:08:12,403 TO BE ADDRESSED. 5224 04:08:12,403 --> 04:08:13,437 QUE KNOW ENVIRONMENTS THE 5225 04:08:13,437 --> 04:08:15,606 CHILDREN ARE IN OR THE ALERT 5226 04:08:15,606 --> 04:08:17,641 STATES OF THE CHILD THE FATIGUE 5227 04:08:17,641 --> 04:08:20,277 LEVEL OF THE CHILD CAN REALLY 5228 04:08:20,277 --> 04:08:22,179 IMPACT THEIR USE OF VISION AND 5229 04:08:22,179 --> 04:08:25,616 THAT BECOMES A STRONG RELIANCE 5230 04:08:25,616 --> 04:08:30,287 ON COMPENSATORY SKILLS WHEN THE 5231 04:08:30,287 --> 04:08:33,190 VISION IS UNLIABLE FOR ANY 5232 04:08:33,190 --> 04:08:33,424 REASON. 5233 04:08:33,424 --> 04:08:34,992 WHEN WE THINK OF ASSESSING 5234 04:08:34,992 --> 04:08:37,862 CHILDREN WITH CVI WE WANTED TO 5235 04:08:37,862 --> 04:08:39,063 MAKE SURE IT ADDRESSED VISUAL 5236 04:08:39,063 --> 04:08:41,665 ATTENTION AND THE CHILD ABILITY 5237 04:08:41,665 --> 04:08:45,269 TO LOOK AND TO RECOGNIZE. 5238 04:08:45,269 --> 04:08:49,640 AND BECAUSE RECOGNITION SIS A 5239 04:08:49,640 --> 04:08:51,242 HUGE ISSUE THERE HAS TO BE 5240 04:08:51,242 --> 04:08:52,710 ONGOING ASSESSMENT WITH THE TEAM 5241 04:08:52,710 --> 04:08:53,644 TO CAPTURE THE DETAILS OF THE 5242 04:08:53,644 --> 04:08:56,413 VISUAL RECOGNITION. 5243 04:08:56,413 --> 04:09:02,286 SO IN DECEMBER 2019, WE CREATED 5244 04:09:02,286 --> 04:09:04,221 THIS HIGH-TECH VISUAL BEHAVIOR 5245 04:09:04,221 --> 04:09:05,489 WHILE IN HER OFFICE. 5246 04:09:05,489 --> 04:09:06,957 WE JUST TRIED TO MAKE EVERYTHING 5247 04:09:06,957 --> 04:09:08,893 THAT WE CURRENTLY KNEW ABOUT 5248 04:09:08,893 --> 04:09:09,894 CVI, EVERYTHING THAT WAS TALKED 5249 04:09:09,894 --> 04:09:13,063 ABOUT IN DIFFERENT TOOLS WE WERE 5250 04:09:13,063 --> 04:09:15,165 USING, ALL THE RESEARCH THAT WE 5251 04:09:15,165 --> 04:09:17,434 COULD PUT OUR HANDS ON AND AGAIN 5252 04:09:17,434 --> 04:09:18,569 MORE IMPORTANTLY EVERYTHING WE 5253 04:09:18,569 --> 04:09:19,870 WERE LEARNING FROM OUR STUDENTS 5254 04:09:19,870 --> 04:09:23,107 AND FAMILIES AND WE BEGAN TO 5255 04:09:23,107 --> 04:09:25,309 DOCUMENT THESE AND TRY TO PUT 5256 04:09:25,309 --> 04:09:27,811 THEM INTO CATEGORIES, TRY TO PUT 5257 04:09:27,811 --> 04:09:29,647 THEM INTO THESE UMBRELLA 5258 04:09:29,647 --> 04:09:32,783 CATEGORIES SO WE COULD CAPTURE 5259 04:09:32,783 --> 04:09:34,351 DIFFERENT VISUAL BEHAVIORS AND 5260 04:09:34,351 --> 04:09:35,219 CLASSIFY THEM. 5261 04:09:35,219 --> 04:09:38,389 AND WHAT WE CAME UP WITH VISUAL 5262 04:09:38,389 --> 04:09:41,025 ATTENTION AND VISUAL RECOGNITION 5263 04:09:41,025 --> 04:09:43,494 AND IMPACT OF CLUTTER AND 5264 04:09:43,494 --> 04:09:45,629 CROWDING AND INCREASED SPACING. 5265 04:09:45,629 --> 04:09:47,631 VISUAL FIELD ABILITIES, IMPACT 5266 04:09:47,631 --> 04:09:53,637 OF COLOR, FORM ACCESSIBILITY 5267 04:09:53,637 --> 04:10:04,114 THAT COMES FROM PEOPLE AND 5268 04:10:05,015 --> 04:10:05,582 SENSORY INTEGRATION WHILE THE 5269 04:10:05,582 --> 04:10:08,185 CHILD IS TRYING TO USE THEIR 5270 04:10:08,185 --> 04:10:08,585 VISUAL. 5271 04:10:08,585 --> 04:10:09,620 VISUAL CURIOSITY. 5272 04:10:09,620 --> 04:10:10,988 THE APPEARANCE OF THE EYE AND 5273 04:10:10,988 --> 04:10:12,723 MOVEMENT OF THE EYE AND OF 5274 04:10:12,723 --> 04:10:14,358 COURSE THE REAL UNDERLYING 5275 04:10:14,358 --> 04:10:17,628 SUPPORT HERE IS THOSE VERY 5276 04:10:17,628 --> 04:10:20,297 IMPORTANT COMPENSATORY SKILLS. 5277 04:10:20,297 --> 04:10:22,733 I'M NOT GOING TO HAVE TIME TO GO 5278 04:10:22,733 --> 04:10:25,202 INTO EACH AREA TO SHOW YOU THE 5279 04:10:25,202 --> 04:10:26,070 REAL UMBRELLA NATURE OF THE 5280 04:10:26,070 --> 04:10:28,339 VISUAL BEHAVIORS BUT WANTED TO 5281 04:10:28,339 --> 04:10:29,340 TAKE AN EXAMPLE OF MOTION. 5282 04:10:29,340 --> 04:10:31,575 SO WHAT WE'VE LEARNED IS THAT 5283 04:10:31,575 --> 04:10:32,910 SOME CHILDREN CAN'T PERCEIVE 5284 04:10:32,910 --> 04:10:37,381 MOTION AT ALL. 5285 04:10:37,381 --> 04:10:38,916 SOME CHILDREN NEED MOTION OR 5286 04:10:38,916 --> 04:10:43,120 AWARENESS OF PEOPLE AND THEIR 5287 04:10:43,120 --> 04:10:44,755 VISUAL ONLY TO MOVEMENT AND WANT 5288 04:10:44,755 --> 04:10:47,624 TO CAPTURE THAT. 5289 04:10:47,624 --> 04:10:48,425 WE KNOW SOME CHILDREN USE MOTION 5290 04:10:48,425 --> 04:10:51,161 FOR RECOGNITION. 5291 04:10:51,161 --> 04:10:53,630 THE WAY A PERSON MOVES MAY HELP 5292 04:10:53,630 --> 04:10:55,199 THEM UNDERSTAND THAT'S THE 5293 04:10:55,199 --> 04:10:57,234 THAT'S HOW THEY IDENTIFY THAT 5294 04:10:57,234 --> 04:10:57,468 PERSON. 5295 04:10:57,468 --> 04:11:02,539 SOME CHILDREN NEED TO MOVE THEIR 5296 04:11:02,539 --> 04:11:06,877 BODIES OR HEADS TO USE THEIR 5297 04:11:06,877 --> 04:11:08,379 VISION DIFFICULTY AND SOME HAVE 5298 04:11:08,379 --> 04:11:09,913 TROUBLE WITH THE SPEED AND 5299 04:11:09,913 --> 04:11:11,382 DIRECTION OF MOVEMENT AND WE SEE 5300 04:11:11,382 --> 04:11:12,082 THAT WITH OUR CHILDREN WHERE YOU 5301 04:11:12,082 --> 04:11:15,452 COME UP TO A CHILD AND THEY 5302 04:11:15,452 --> 04:11:15,919 PULLBACK. 5303 04:11:15,919 --> 04:11:16,787 THEY DON'T REALLY UNDERSTAND 5304 04:11:16,787 --> 04:11:19,256 WHERE YOU ARE IN SPACE AND 5305 04:11:19,256 --> 04:11:20,657 AROUND SAFETY AND CROSSING 5306 04:11:20,657 --> 04:11:21,525 STREETS. 5307 04:11:21,525 --> 04:11:23,027 WE KNOW MOTION CAN BE 5308 04:11:23,027 --> 04:11:24,595 DISTRACTING AND WE KNOW THAT 5309 04:11:24,595 --> 04:11:28,565 CHILDREN ARE SOMETIMES UNABLE TO 5310 04:11:28,565 --> 04:11:30,501 DISENGAGE FROM THIS MOTION. 5311 04:11:30,501 --> 04:11:31,368 WE KNOW CHILDREN ARE DISTURBED 5312 04:11:31,368 --> 04:11:33,170 BY BUSY ENVIRONMENT. 5313 04:11:33,170 --> 04:11:36,940 WE'VE COME TO THINK IT IN 5314 04:11:36,940 --> 04:11:37,775 MULTIPLE WAYS AND AROUND MOTION 5315 04:11:37,775 --> 04:11:38,909 WE WANT TO MAKE SURE WE 5316 04:11:38,909 --> 04:11:40,411 UNDERSTAND WHAT KIND OF MOTION 5317 04:11:40,411 --> 04:11:42,446 IS TOLERATED IN THESE BUSY 5318 04:11:42,446 --> 04:11:43,680 ENVIRONMENTS. 5319 04:11:43,680 --> 04:11:45,616 THIS COMES FROM OUR FAMILIES. 5320 04:11:45,616 --> 04:11:47,251 SOME FAMILIES THE CHILD CAN'T 5321 04:11:47,251 --> 04:11:49,353 HANDLE BEING IN A MALL WHERE 5322 04:11:49,353 --> 04:11:51,555 THERE'S RANDOM MOTION BUT IF 5323 04:11:51,555 --> 04:11:54,858 THEY'RE IN A ROLLER SKATING RINK 5324 04:11:54,858 --> 04:11:56,593 OR HALLWAY WHERE EVERYONE'S 5325 04:11:56,593 --> 04:11:58,562 WALKING IN THE SAME DIRECTION OR 5326 04:11:58,562 --> 04:12:00,764 IN CHURCH WHERE EVERYONE'S 5327 04:12:00,764 --> 04:12:01,565 WALKING IN THE SAME DIRECTION 5328 04:12:01,565 --> 04:12:05,903 THEY'RE NOT BOTHERED BY THOSE 5329 04:12:05,903 --> 04:12:10,207 BUSY ENVIRONMENTS. 5330 04:12:10,207 --> 04:12:13,744 WE KNOW WE MUST CAPTURE THE 5331 04:12:13,744 --> 04:12:16,580 COMPENSATORY SKILLS BEYOND SMELL 5332 04:12:16,580 --> 04:12:17,648 AND TACTILE WHERE KIDS QUESTION 5333 04:12:17,648 --> 04:12:19,149 AND LABEL THINGS. 5334 04:12:19,149 --> 04:12:20,150 THESE ARE COMPENSATORY SKILLS 5335 04:12:20,150 --> 04:12:23,087 BUT WE BROADENED IT AGAIN TO 5336 04:12:23,087 --> 04:12:25,022 THINK ABOUT COPING SKILLS. 5337 04:12:25,022 --> 04:12:26,723 HOW MUCH A CHILD RELIES ON 5338 04:12:26,723 --> 04:12:27,291 CONTACT. 5339 04:12:27,291 --> 04:12:28,125 MAYBE THEY UNDERSTAND THEIR 5340 04:12:28,125 --> 04:12:29,626 SPOON WHEN THEY'RE IN THE 5341 04:12:29,626 --> 04:12:32,763 KITCHEN WITH THE CONTEXT OF 5342 04:12:32,763 --> 04:12:35,332 SMELL AND TOUCH AND PREDICTION 5343 04:12:35,332 --> 04:12:36,200 BUT THEN THEY DON'T UNDERSTAND 5344 04:12:36,200 --> 04:12:37,000 THAT SPOON OUTSIDE OF THAT 5345 04:12:37,000 --> 04:12:41,438 CONTEXT. 5346 04:12:41,438 --> 04:12:43,974 THEY MAY RELY ON MEMORY AND 5347 04:12:43,974 --> 04:12:44,274 PREDICTION. 5348 04:12:44,274 --> 04:12:46,310 SO MANY CHILDREN ARE HIGHLY 5349 04:12:46,310 --> 04:12:46,710 ORGANIZED. 5350 04:12:46,710 --> 04:12:47,945 THEY WANT THINGS BACK IN THE 5351 04:12:47,945 --> 04:12:50,614 SAME PLACE AND RELY ON THEIR 5352 04:12:50,614 --> 04:12:51,882 MEMORY IN ORDER TO FIND THOSE 5353 04:12:51,882 --> 04:12:52,850 THINGS. 5354 04:12:52,850 --> 04:12:54,118 IF THOSE THINGS ARE NOT IN THE 5355 04:12:54,118 --> 04:12:56,854 PLACE THEY EXPECT THEY HAVE 5356 04:12:56,854 --> 04:12:59,389 DIFFICULT TIME FINDING IT. 5357 04:12:59,389 --> 04:13:00,924 WE KNOW THEY VERY MUCH RELY ON 5358 04:13:00,924 --> 04:13:02,359 COLOR CODING WHERE THEY DON'T 5359 04:13:02,359 --> 04:13:06,396 REALLY PAY ATTENTION TO THE 5360 04:13:06,396 --> 04:13:08,866 SHAPES OF OBJECTS BUT CODE BY 5361 04:13:08,866 --> 04:13:10,234 COLOR. 5362 04:13:10,234 --> 04:13:12,236 THEY MAY MIX THINGS UP BASED ON 5363 04:13:12,236 --> 04:13:14,338 COLOR WE WANT TO BE AWARE TO 5364 04:13:14,338 --> 04:13:15,973 CREATE PROGRAMMING THAT RESPECTS 5365 04:13:15,973 --> 04:13:16,173 THIS. 5366 04:13:16,173 --> 04:13:17,474 IT'S A GREAT SKILL TO CODE BY 5367 04:13:17,474 --> 04:13:17,908 COLOR. 5368 04:13:17,908 --> 04:13:20,644 WE WANT TO CAPTURE THAT ALL 5369 04:13:20,644 --> 04:13:22,913 THESE GIFTS THE CHILD BRINGS TO 5370 04:13:22,913 --> 04:13:23,747 UNDERSTANDING THEIR VISUAL WORLD 5371 04:13:23,747 --> 04:13:27,184 AND AGAIN RELYING ON MOTION TO 5372 04:13:27,184 --> 04:13:29,653 UNDERSTAND WHAT'S GOING ON 5373 04:13:29,653 --> 04:13:36,760 AROUND THEM. 5374 04:13:36,760 --> 04:13:37,628 WE HAVE TO MAKE SURE WE CONSIDER 5375 04:13:37,628 --> 04:13:39,062 THE DIFFERENT ABILITIES AND 5376 04:13:39,062 --> 04:13:41,632 DIFFERENT LANGUAGE ABILITIES AND 5377 04:13:41,632 --> 04:13:42,199 VULNERABILITIES AND MEMORY 5378 04:13:42,199 --> 04:13:45,602 ABILITIES. 5379 04:13:45,602 --> 04:13:47,638 WE DEVELOPED A PROTOCOL WE USED 5380 04:13:47,638 --> 04:13:53,677 ON CAMPUS AND SWITCHED TO A 5381 04:13:53,677 --> 04:13:54,511 PLAY-BASED ASSESSMENT. 5382 04:13:54,511 --> 04:13:56,713 WE'VE AND THIS IS BASED ON 5383 04:13:56,713 --> 04:13:58,215 THINGS WE KNOW THE CHILD LIKED 5384 04:13:58,215 --> 04:13:59,850 AND THIS CAME FROM THE PARENT. 5385 04:13:59,850 --> 04:14:01,518 AND THIS REALLY HELP US TO 5386 04:14:01,518 --> 04:14:04,421 UNDERSTAND THE DEFICITS AND 5387 04:14:04,421 --> 04:14:05,923 STRENGTHS OF THE CHILD AND GAVE 5388 04:14:05,923 --> 04:14:07,024 US FUNCTIONAL VISION BEHAVIORS 5389 04:14:07,024 --> 04:14:09,193 WE CAN REPORT BACK TO THE TEAM 5390 04:14:09,193 --> 04:14:11,028 TO THE PARENTS AND TO THE 5391 04:14:11,028 --> 04:14:13,830 MEDICAL COMMUNITY IN SOME CASES 5392 04:14:13,830 --> 04:14:16,133 THAT WOULD SUPPORT A DIAGNOSIS. 5393 04:14:16,133 --> 04:14:17,634 WE WANTED TO PROVIDE THIS 5394 04:14:17,634 --> 04:14:19,603 VALUABLE INFORMATION ABOUT THE 5395 04:14:19,603 --> 04:14:21,004 COMPENSATORY SKILL USE AND 5396 04:14:21,004 --> 04:14:23,307 ESTABLISH A REAL COLLABORATION 5397 04:14:23,307 --> 04:14:24,608 AND PARTNERSHIP WITH THE 5398 04:14:24,608 --> 04:14:25,909 FAMILIES AND MEDICAL AND 5399 04:14:25,909 --> 04:14:34,885 EDUCATION AL PROVIDERS WE NEED 5400 04:14:34,885 --> 04:14:45,395 WHOLE TEAM APPROACH WE GO IN 5401 04:14:46,797 --> 04:14:49,299 THEIR EDUCATIONAL HISTORY AND 5402 04:14:49,299 --> 04:14:50,834 PART 5403 04:14:50,834 --> 04:14:52,102 PART 5404 04:14:52,102 --> 04:14:54,404 PARTNER WITH TEAMS AND WE GET 5405 04:14:54,404 --> 04:14:57,474 VALUABLE INFORMATION THROUGH A 5406 04:14:57,474 --> 04:14:58,475 PARENT INTERVIEW AND THAT HELPS 5407 04:14:58,475 --> 04:15:00,644 US DECIDE WHAT THE CHILD'S BEST 5408 04:15:00,644 --> 04:15:02,045 QUALITIES ARE AND FAVORITE 5409 04:15:02,045 --> 04:15:04,348 THINGS ARE AND WHAT THEIR 5410 04:15:04,348 --> 04:15:10,821 RELIABLE RESPONSES AND DO THEY 5411 04:15:10,821 --> 04:15:13,290 RECOGNIZE THROUGH FACIAL 5412 04:15:13,290 --> 04:15:14,625 EXPRESSIONS AND HELPS IN DESIGN 5413 04:15:14,625 --> 04:15:16,293 AND ASSESSMENT ON THE RELIABLE 5414 04:15:16,293 --> 04:15:16,560 RESPONSES. 5415 04:15:16,560 --> 04:15:19,263 WE HAVE THE MEDICAL ENGAGEMENT 5416 04:15:19,263 --> 04:15:23,400 AND TEAM ENGAGEMENT. 5417 04:15:23,400 --> 04:15:26,270 WE HAVE DIRECT OBSERVATION AND 5418 04:15:26,270 --> 04:15:28,205 ASSESSMENT AND ALSO GENERATE A 5419 04:15:28,205 --> 04:15:29,506 REPORT AND EXECUTIVE SUMMARY 5420 04:15:29,506 --> 04:15:33,010 WHICH IS JUST A SMALL SYNOPSIS 5421 04:15:33,010 --> 04:15:35,145 OF WHAT THE CHILD CAN DO FOR THE 5422 04:15:35,145 --> 04:15:36,513 CLASSROOM TEACHER. 5423 04:15:36,513 --> 04:15:39,549 THE HIGHLIGHTED AND IMPORTANT 5424 04:15:39,549 --> 04:15:41,285 ELEMENTS ARE ALWAYS UNDERSTOOD 5425 04:15:41,285 --> 04:15:41,918 LIKE THE BEST VISUAL FIELD, FOR 5426 04:15:41,918 --> 04:15:51,395 INSTANCE. 5427 04:15:51,395 --> 04:15:54,631 AND WE DECIDED TO DEVELOP A 5428 04:15:54,631 --> 04:15:57,301 DIGITAL VERSION AND WE WANT THIS 5429 04:15:57,301 --> 04:15:58,735 TO BE FREE RESEARCH BASED 5430 04:15:58,735 --> 04:16:01,038 EDUCATIONAL AND COLLABORATIVE. 5431 04:16:01,038 --> 04:16:02,773 VERY MUCH LIKE OUR ON CAMPUS 5432 04:16:02,773 --> 04:16:04,207 STARTS WITH THE REVIEW AND WHERE 5433 04:16:04,207 --> 04:16:05,709 WE SET UP THE COLLABORATION WITH 5434 04:16:05,709 --> 04:16:07,077 THE MEDICAL COMMUNITY. 5435 04:16:07,077 --> 04:16:10,314 WE WANT TO KNOW THOSE OCULAR 5436 04:16:10,314 --> 04:16:12,015 CONDITIONS, THE LEGAL BLINDNESS 5437 04:16:12,015 --> 04:16:13,617 STATUS AND DIAGNOSIS STATUS AND 5438 04:16:13,617 --> 04:16:14,651 WHO DIAGNOSED THEM? 5439 04:16:14,651 --> 04:16:17,387 WE WANT TO MAKE SURE IT'S A 5440 04:16:17,387 --> 04:16:19,823 MEDICAL DIAGNOSIS NOBODY JUST 5441 04:16:19,823 --> 04:16:21,858 MENTIONS CVI THAT DOESN'T HAVE A 5442 04:16:21,858 --> 04:16:26,163 MEDICAL BACKGROUND AND THE 5443 04:16:26,163 --> 04:16:28,098 EDUCATIONAL REVIEW INCLUDES ALL 5444 04:16:28,098 --> 04:16:29,933 THE REPORTS FROM OTHER TEAM 5445 04:16:29,933 --> 04:16:32,502 MEMBERS AND THE IEP WITH SO MANY 5446 04:16:32,502 --> 04:16:37,307 GREAT INCLUDE ABOUT A CHILD'S 5447 04:16:37,307 --> 04:16:40,444 FUNCTIONING AROUND THEIR VISION. 5448 04:16:40,444 --> 04:16:41,278 THE STUDENT PORTRAIT WAS 5449 04:16:41,278 --> 04:16:43,246 DEVELOPED AT AN INITIAL LOOK AT 5450 04:16:43,246 --> 04:16:43,914 THE CHILD. 5451 04:16:43,914 --> 04:16:45,615 THE PARENT WILL TELL US WHAT 5452 04:16:45,615 --> 04:16:47,951 OTHER DIAGNOSES THE CHILD HAS 5453 04:16:47,951 --> 04:16:51,455 WHETHER DOWN SYNDROME OR CP OR 5454 04:16:51,455 --> 04:16:52,356 SOMETHING ELSE. 5455 04:16:52,356 --> 04:16:53,623 STRENGTHS AND WEAKNESSES AND 5456 04:16:53,623 --> 04:16:55,058 FAVORITE OBJECTS AND ACTIVITIES 5457 04:16:55,058 --> 04:16:57,494 AND RELIABLE RESPONSES WE WERE 5458 04:16:57,494 --> 04:16:59,096 ABLE TO EMBED SOME RESEARCH 5459 04:16:59,096 --> 04:16:59,730 QUESTIONS. 5460 04:16:59,730 --> 04:17:01,965 WE HAD TALKED TO SOME MEDICAL 5461 04:17:01,965 --> 04:17:04,034 ERS AND RESEARCHERS AND ASKED 5462 04:17:04,034 --> 04:17:06,303 THEM WHAT KINDS OF QUESTIONS 5463 04:17:06,303 --> 04:17:08,004 WOULD BE HELPFUL AROUND CVI. 5464 04:17:08,004 --> 04:17:08,538 HERE'S A COUPLE THAT WERE 5465 04:17:08,538 --> 04:17:11,641 SHARED. 5466 04:17:11,641 --> 04:17:14,678 THEY WANTED TO KNOW WHAT LEVEL 5467 04:17:14,678 --> 04:17:17,247 OF PREMATURELY THE CHILDREN WITH 5468 04:17:17,247 --> 04:17:18,448 CVI HAD. 5469 04:17:18,448 --> 04:17:23,587 THE LEVELS OF PREMATURELY 5470 04:17:23,587 --> 04:17:24,921 REFLECT THE INFORMATION. 5471 04:17:24,921 --> 04:17:26,390 WANTED TO KNOW IF THERE'S 5472 04:17:26,390 --> 04:17:27,924 EVIDENCE OF BRAIN INJURY AND THE 5473 04:17:27,924 --> 04:17:29,960 TIMING OF THAT INJURY AND THE 5474 04:17:29,960 --> 04:17:33,130 MRI RESULTS IF THEY WERE 5475 04:17:33,130 --> 04:17:33,397 AVAILABLE. 5476 04:17:33,397 --> 04:17:35,098 WHETHER THE CHILD SPENT AN 5477 04:17:35,098 --> 04:17:38,935 EXTENDED TIME IN THE NICU AND 5478 04:17:38,935 --> 04:17:39,569 WHETHER BREENLING SUPPORT WAS 5479 04:17:39,569 --> 04:17:41,638 NEED THESE ARE ALL QUESTIONS 5480 04:17:41,638 --> 04:17:42,139 MEDICAL PROVIDERS AND 5481 04:17:42,139 --> 04:17:45,609 RESEARCHERS ASKED US TO PUT IN 5482 04:17:45,609 --> 04:17:48,211 THE PORTRAIT. 5483 04:17:48,211 --> 04:17:50,981 WE THEN DO A PARENT INTERVIEW IN 5484 04:17:50,981 --> 04:17:51,214 PERSON. 5485 04:17:51,214 --> 04:17:52,048 WE HAVE 42 PLUS. 5486 04:17:52,048 --> 04:17:54,684 DEPENDING ON WHAT IS ANSWERED IN 5487 04:17:54,684 --> 04:17:56,319 THE STUDENT PORTRAIT, CERTAIN 5488 04:17:56,319 --> 04:17:57,254 QUESTIONS WILL DROP AWAY. 5489 04:17:57,254 --> 04:17:59,623 IF THE PARENT ANSWERS THE CHILD 5490 04:17:59,623 --> 04:18:01,691 DOESN'T HAVE USE OF THEIR LOWER 5491 04:18:01,691 --> 04:18:03,093 LIMBS, WE'RE NOT ASKING ANY 5492 04:18:03,093 --> 04:18:05,262 LOWER LIMB FUNCTIONING 5493 04:18:05,262 --> 04:18:05,629 QUESTIONS. 5494 04:18:05,629 --> 04:18:07,664 THAT'S WHY A PARENT INTERVIEW 5495 04:18:07,664 --> 04:18:09,466 CAN BE DIFFERENT. 5496 04:18:09,466 --> 04:18:11,401 THE PARENT INTERVIEW NOW HAS IN 5497 04:18:11,401 --> 04:18:19,609 THE DIGITAL PLATFORM A SCALE AND 5498 04:18:19,609 --> 04:18:22,679 WE HAVE A TEAM INTERVIEW TO GET 5499 04:18:22,679 --> 04:18:25,982 AT THE TEAM. 5500 04:18:25,982 --> 04:18:28,118 FROM THE REVIEW AND PORTRAIT AND 5501 04:18:28,118 --> 04:18:30,554 INTERVIEWS THE TOOL WILL CREATE 5502 04:18:30,554 --> 04:18:32,589 A STUDENT EXEC A SMALL SYNOPSIS 5503 04:18:32,589 --> 04:18:35,192 OF THE CHILD FUNCTIONING NOT A 5504 04:18:35,192 --> 04:18:36,026 FULL ASSESSMENT OF THE SYNOPSIS 5505 04:18:36,026 --> 04:18:38,562 OF WHAT WE LEARNED SO FAR AND 5506 04:18:38,562 --> 04:18:41,131 GENERATE A DOCTOR'S LETTER WHICH 5507 04:18:41,131 --> 04:18:42,599 WILL BASICALLY SAY HERE'S SOME 5508 04:18:42,599 --> 04:18:43,500 OF THE FUNCTIONAL INFORMATION 5509 04:18:43,500 --> 04:18:46,403 THAT WE'VE GAINED FROM THE 5510 04:18:46,403 --> 04:18:49,172 PARENTS AND TEAM AND OWN 5511 04:18:49,172 --> 04:18:51,875 OBSERVATIONS THAT MIGHT SUPPORT 5512 04:18:51,875 --> 04:18:52,242 A DIAGNOSIS. 5513 04:18:52,242 --> 04:18:58,515 THAT IS GENERATED BY THE TOOL. 5514 04:18:58,515 --> 04:19:01,218 THE INTERVIEW AND STUDENT 5515 04:19:01,218 --> 04:19:03,353 PORTRAIT ALLOWS THE TVI TO 5516 04:19:03,353 --> 04:19:06,556 DEVELOP THEIR PROTOCOLS. 5517 04:19:06,556 --> 04:19:09,292 BASED ON WHAT THE CHILD LIKES. 5518 04:19:09,292 --> 04:19:12,195 AND THEN FINALLY FROM THE 5519 04:19:12,195 --> 04:19:13,630 OBSERVATION AND DIRECT 5520 04:19:13,630 --> 04:19:15,265 ASSESSMENT PROTOCOLS AT ALL THE 5521 04:19:15,265 --> 04:19:15,966 OTHER INFORMATION, A FINAL 5522 04:19:15,966 --> 04:19:18,001 REPORT IS GENERATED WHICH 5523 04:19:18,001 --> 04:19:20,437 DISCUSSES THE FUNCTIONAL VISION 5524 04:19:20,437 --> 04:19:23,240 OF THE CHILD, THE COMPENSATORY 5525 04:19:23,240 --> 04:19:24,908 SKILLS AND RECOMMENDATIONS AND 5526 04:19:24,908 --> 04:19:26,910 THE RECOMMENDATIONS ARE GROUPED 5527 04:19:26,910 --> 04:19:31,681 ACCORDING TO ENVIRONMENTAL 5528 04:19:31,681 --> 04:19:33,617 REQUIREMENTS, LEARNING MATERIAL 5529 04:19:33,617 --> 04:19:35,151 REQUIREMENTS, PRESENTATION, 5530 04:19:35,151 --> 04:19:36,520 PHYSICAL REQUIREMENTS AND SOCIAL 5531 04:19:36,520 --> 04:19:37,587 SUPPORTS OR NAVIGATION 5532 04:19:37,587 --> 04:19:38,054 REQUIREMENTS. 5533 04:19:38,054 --> 04:19:41,057 WE ALSO HAVE SOME OTHER EMBEDDED 5534 04:19:41,057 --> 04:19:47,264 RESOURCES WESTBOUND THE -- WITH 5535 04:19:47,264 --> 04:19:47,764 THE TOOL. 5536 04:19:47,764 --> 04:19:50,300 WE HAVE AN ASSESSMENT AND 5537 04:19:50,300 --> 04:19:51,868 ONGOING MONITOR SHEET BECAUSE 5538 04:19:51,868 --> 04:19:53,570 ANY ASSESSMENT IS A MOMENT IN 5539 04:19:53,570 --> 04:19:54,638 TIME FOR A CHILD WITH CVI. 5540 04:19:54,638 --> 04:19:57,641 WE NEED TO MONITOR THE PROGRESS 5541 04:19:57,641 --> 04:20:00,243 ACROSS TIME AND ENVIRONMENTS AND 5542 04:20:00,243 --> 04:20:01,244 A RECOGNITION TEMPLATE WHICH IS 5543 04:20:01,244 --> 04:20:03,647 SHARED WITH THE PARENT SO WE GET 5544 04:20:03,647 --> 04:20:05,282 THE DETAILS OF WHAT THINGS ARE 5545 04:20:05,282 --> 04:20:05,849 RECOGNIZED IN THEIR VISUAL 5546 04:20:05,849 --> 04:20:12,489 WORLD. 5547 04:20:12,489 --> 04:20:14,491 WE WERE LUCKY ENOUGH TO TO USE 5548 04:20:14,491 --> 04:20:16,293 THE COMPANY CALLED ED COUNT. 5549 04:20:16,293 --> 04:20:18,461 THEY HELP US TO ESTABLISH PARENT 5550 04:20:18,461 --> 04:20:21,631 INTERVIEW RELIABILITY AND 5551 04:20:21,631 --> 04:20:23,533 VALIDITY AND DEVELOPED OUR 5552 04:20:23,533 --> 04:20:25,135 TECHNICAL MANUAL AND HELPED 5553 04:20:25,135 --> 04:20:30,273 GATHER VISUAL BEHAVIORS. 5554 04:20:30,273 --> 04:20:32,409 IF WE COULD NOT FIND A BODY OF 5555 04:20:32,409 --> 04:20:33,610 RESEARCH ABOUT VISUAL BEHAVIOR 5556 04:20:33,610 --> 04:20:35,645 IT COULD NOT APPEAR ON THE 5557 04:20:35,645 --> 04:20:36,780 PROTOCOL. 5558 04:20:36,780 --> 04:20:38,882 THEY ALSO HELP US CONDUCT 5559 04:20:38,882 --> 04:20:44,387 MULTIPLE TRIALS THAT CULMINATED 5560 04:20:44,387 --> 04:20:46,222 IN A NATIONAL TRIAL WITH PARENT 5561 04:20:46,222 --> 04:20:49,426 INTERVIEW THAT GAVE US 114 5562 04:20:49,426 --> 04:20:50,527 DIFFERENT INTERVIEWS. 5563 04:20:50,527 --> 04:20:53,763 IT TOLD US WE HAD A HIGH DEGREE 5564 04:20:53,763 --> 04:20:55,966 OF RELIABILITY THE THEY WERE 5565 04:20:55,966 --> 04:20:57,634 ANSWERING THE SCALE IN THE SAME 5566 04:20:57,634 --> 04:20:59,970 WAY REGARDLESS OF THEIR PRIOR 5567 04:20:59,970 --> 04:21:01,605 KNOWLEDGE OF CVI. 5568 04:21:01,605 --> 04:21:05,609 CURRENTLY WE'RE WORK WITH 5569 04:21:05,609 --> 04:21:08,345 BRILLIANT ASSESSMENTS DEVELOPING 5570 04:21:08,345 --> 04:21:09,045 OUR DIGITAL PLATFORM. 5571 04:21:09,045 --> 04:21:10,747 WE'RE DOING THAT WITH BRILLIANT 5572 04:21:10,747 --> 04:21:13,516 ASSESSMENTS AT THIS POINT. 5573 04:21:13,516 --> 04:21:16,353 AND WE'RE PROVIDING LOGIC MAP 5574 04:21:16,353 --> 04:21:18,355 FOR THE TOOL WHICH WILL BE HIPAA 5575 04:21:18,355 --> 04:21:19,889 COMPLIANT AND FREE AND ONLINE 5576 04:21:19,889 --> 04:21:21,725 AND ACCESSIBLE AND EASY TO USE 5577 04:21:21,725 --> 04:21:24,260 AND HAVE EMBEDDED VIDEOS BECAUSE 5578 04:21:24,260 --> 04:21:26,863 WE FEEL LICK THE WORLD OF CVI 5579 04:21:26,863 --> 04:21:28,999 NEEDS MORE EDUCATION AROUND CVI 5580 04:21:28,999 --> 04:21:32,902 AND VISUAL BEHAVIORS IT WILL 5581 04:21:32,902 --> 04:21:38,908 PROVIDE PDF AND WORD OUTPUTS AND 5582 04:21:38,908 --> 04:21:41,611 CUSTOMIZE INFORMATION TO ALL THE 5583 04:21:41,611 --> 04:21:45,615 DOCUMENTS AVAILABLE AND PROVIDE 5584 04:21:45,615 --> 04:21:48,184 THE DATA AGGREGATION. 5585 04:21:48,184 --> 04:21:52,222 THE RELEASE DATE IS JANUARY, 5586 04:21:52,222 --> 04:21:52,422 2024. 5587 04:21:52,422 --> 04:21:54,324 ONE OF THE REASONS WE DECIDED TO 5588 04:21:54,324 --> 04:21:56,359 PUT THIS UP DIGITALLY IS WE 5589 04:21:56,359 --> 04:21:57,894 NEEDED IT FLEXIBLE. 5590 04:21:57,894 --> 04:21:59,329 IN THE WORLD OF CVI IT'S 5591 04:21:59,329 --> 04:22:00,930 CHANGING WITH NEW INFORMATION 5592 04:22:00,930 --> 04:22:02,365 ALL THE TIME. 5593 04:22:02,365 --> 04:22:05,135 WE WANTED TO UPTAKE AND EXPAND 5594 04:22:05,135 --> 04:22:10,206 THE INFORMATION AS MUCH AS WE 5595 04:22:10,206 --> 04:22:16,546 COULD. 5596 04:22:16,546 --> 04:22:22,819 WE WANTED TO ALLOW MEDICAL 5597 04:22:22,819 --> 04:22:23,386 PROVIDERS AND RESEARCH 5598 04:22:23,386 --> 04:22:26,156 EDUCATIONAL TO USE THE TOOLS AN 5599 04:22:26,156 --> 04:22:29,492 ANSWER QUESTIONS IN CVI. 5600 04:22:29,492 --> 04:22:31,227 WE WANTED TO BECOME FOCUSSED ON 5601 04:22:31,227 --> 04:22:32,562 CAUSES AND SYNDROMES AND WHAT 5602 04:22:32,562 --> 04:22:36,266 ARE WE SEEING FROM THE CHILDREN 5603 04:22:36,266 --> 04:22:38,735 ASSESSED FROM THE TOOL IF THEY 5604 04:22:38,735 --> 04:22:40,036 HAVE DOWN SYNDROME WHAT ARE WE 5605 04:22:40,036 --> 04:22:45,241 SEEING IN THEIR ANSWERS AND 5606 04:22:45,241 --> 04:22:45,575 PROFILES. 5607 04:22:45,575 --> 04:22:47,644 IS THAT SOMETHING WE CAN HONE IN 5608 04:22:47,644 --> 04:22:53,216 AND ADDRESS IN A CAUSE OR A 5609 04:22:53,216 --> 04:22:55,051 CO-EXISTING CONDITION AND NEED 5610 04:22:55,051 --> 04:22:58,254 TO DEVELOP ON THE 0 TO 5611 04:22:58,254 --> 04:23:01,124 3-YEAR-OLD POPULATION AND HAVE 5612 04:23:01,124 --> 04:23:01,825 ENGAGED EXPORTS TRYING TO 5613 04:23:01,825 --> 04:23:03,259 INFORMATION THESE AGE GROUP AND 5614 04:23:03,259 --> 04:23:05,628 WHAT CLUSTERS OF AGE GROUPS DOES 5615 04:23:05,628 --> 04:23:08,465 IT MAKE SENSE TO PUT TOGETHER 5616 04:23:08,465 --> 04:23:13,636 BETWEEN THE AGE OF 0 TO 3 MONTHS 5617 04:23:13,636 --> 04:23:16,473 OR SHOULD THEY BE BROADER. 5618 04:23:16,473 --> 04:23:17,340 SO THAT'S IN PROCESS. 5619 04:23:17,340 --> 04:23:21,711 ALSO THANK YOU FOR YOUR TIME . 5620 04:23:21,711 --> 04:23:23,646 >> I HOPE YOU'RE FEELING BETTER. 5621 04:23:23,646 --> 04:23:26,149 OUR LAST PRESENTATION IN THE 5622 04:23:26,149 --> 04:23:34,257 SECTION IS DR. NICOLA McDOWELL 5623 04:23:34,257 --> 04:23:37,627 SENIOR LECTURE YOU ARE INSTITUTE 5624 04:23:37,627 --> 04:23:39,562 OF EDUCATION MASSEY UNIVERSITY 5625 04:23:39,562 --> 04:23:41,397 AND FOUNDER AND CREATOR OF 5626 04:23:41,397 --> 04:23:43,099 AUSTIN ASSESSMENT AND I KNOW 5627 04:23:43,099 --> 04:23:44,167 YOU'RE IN NEW ZEALAND. 5628 04:23:44,167 --> 04:23:45,268 THANK YOU FOR JOINING US TODAY. 5629 04:23:45,268 --> 04:23:47,070 >> THANK YOU FOR THE OPPORTUNITY 5630 04:23:47,070 --> 04:23:50,440 TO PRESENT ON THE VALIDATION OF 5631 04:23:50,440 --> 04:23:55,812 THE ASSESSMENT AND PROVIDING 5632 04:23:55,812 --> 04:23:57,013 WHERE WE ARE. 5633 04:23:57,013 --> 04:24:01,885 A QUICK OVERVIEW THE AUSTIN 5634 04:24:01,885 --> 04:24:03,920 ASSESSMENT IS FOR VISUAL ISSUES. 5635 04:24:03,920 --> 04:24:06,389 IT HELPS IDENTIFY ISSUES WITH 5636 04:24:06,389 --> 04:24:08,491 HIGH VISUAL FUNCTION AND ALSO 5637 04:24:08,491 --> 04:24:14,063 HELPS TO PICK UP VISUAL FIELD 5638 04:24:14,063 --> 04:24:19,335 ISSUES. 5639 04:24:19,335 --> 04:24:20,904 WE HAVE CARDS OVER FIVE LEVELS. 5640 04:24:20,904 --> 04:24:22,505 THE FIRST STARS WITH FOUR CARDS 5641 04:24:22,505 --> 04:24:25,074 AND ONE PEER AND UP TO 12 YARDS 5642 04:24:25,074 --> 04:24:29,646 AND FIVE PAIRS AT LEVEL FIVE. 5643 04:24:29,646 --> 04:24:32,248 THE COMPLETE ASSESSMENT INCLUDES 5644 04:24:32,248 --> 04:24:35,285 A MULTI-COLORED ROUND AND SOME 5645 04:24:35,285 --> 04:24:37,821 FIND IT TO HELP AND OTHERS FIND 5646 04:24:37,821 --> 04:24:38,788 COLOR DISTRACTING. 5647 04:24:38,788 --> 04:24:41,191 CHILDREN NEED TO HAVE THE 5648 04:24:41,191 --> 04:24:45,628 COGNITIVE ABILITY TO BE ABLE TO 5649 04:24:45,628 --> 04:24:47,630 MATCH TO COMPLETE THE 5650 04:24:47,630 --> 04:24:48,665 ASSESSMENT. 5651 04:24:48,665 --> 04:24:49,799 THERE'S FOUR VARIABLES INCLUDING 5652 04:24:49,799 --> 04:24:52,769 TIME TO COMPLETE THE ASSESSMENT, 5653 04:24:52,769 --> 04:24:55,905 MATCHING THE PEERS, THE TIME IT 5654 04:24:55,905 --> 04:24:59,609 TAKES TO MATCH THE FIRST PEER 5655 04:24:59,609 --> 04:25:01,778 AND THESE VARIABLES ELECT WITH 5656 04:25:01,778 --> 04:25:03,580 THE INDICATORS OF ISSUES WITH 5657 04:25:03,580 --> 04:25:04,981 THE HIGH VISUAL FUNCTION NOW 5658 04:25:04,981 --> 04:25:08,551 CONFIRMED BY THE TEAM AT THE CVI 5659 04:25:08,551 --> 04:25:11,821 NEUROPLASTICITY LAB AT HARVARD. 5660 04:25:11,821 --> 04:25:13,489 AND THEY HAVE SMALLER SEARCH 5661 04:25:13,489 --> 04:25:15,859 TIMES AND LEAST ACCURATE AND 5662 04:25:15,859 --> 04:25:20,530 HAVE A SLOWER RESPONSE TIME TO 5663 04:25:20,530 --> 04:25:27,871 VISUAL STIMULI DATA AND WHEN THE 5664 04:25:27,871 --> 04:25:30,240 LEVEL ARE INDICATED THEY DISPLAY 5665 04:25:30,240 --> 04:25:35,445 THE THRESHOLDS FOR EACH ROUND 5666 04:25:35,445 --> 04:25:40,383 AND FOR THE MULTI-COLORED AND 5667 04:25:40,383 --> 04:25:41,651 SINGLE COLORED ROUND AND THEY 5668 04:25:41,651 --> 04:25:43,253 DEVELOP A 5669 04:25:43,253 --> 04:25:43,920 [TECHNICAL DIFFICULTIES] 5670 04:25:43,920 --> 04:25:47,290 NOR VARIABLE. 5671 04:25:47,290 --> 04:25:50,493 WHEN A THRESHOLD IS MET THEY MAY 5672 04:25:50,493 --> 04:25:52,128 HAVE A VISUAL ISSUE AND FURTHER 5673 04:25:52,128 --> 04:25:54,597 ASSESSMENT IS NEEDED TO CON 5674 04:25:54,597 --> 04:25:54,831 FIRM. 5675 04:25:54,831 --> 04:25:57,066 A REPORT IS GENERATED IN THE END 5676 04:25:57,066 --> 04:25:57,700 TO BE DOWNLOADED AND SHARED AS 5677 04:25:57,700 --> 04:26:03,006 NEEDED. 5678 04:26:03,006 --> 04:26:07,510 THE HAS BEEN DONE IN THREE 5679 04:26:07,510 --> 04:26:07,810 PHASES. 5680 04:26:07,810 --> 04:26:11,714 ONE WAS 364 CHILDREN BETWEEN 5 5681 04:26:11,714 --> 04:26:15,585 AND 18 TO ESTABLISH A DATABASE. 5682 04:26:15,585 --> 04:26:18,021 AND LOOK AT THE ASSESSMENT AS 5683 04:26:18,021 --> 04:26:21,624 THE SCREENING TOOL AND INCLUDED 5684 04:26:21,624 --> 04:26:26,095 SCREENING 2 72 CHILDREN BETWEEN 5685 04:26:26,095 --> 04:26:28,898 5 AND 18. 5686 04:26:28,898 --> 04:26:31,935 PHASE 3 INCLUDED VALIDATION 5687 04:26:31,935 --> 04:26:34,237 RESEARCH WITH THE AUSTIN 5688 04:26:34,237 --> 04:26:37,073 ASSESSMENT SO AN ALREADY 5689 04:26:37,073 --> 04:26:37,740 VALIDATED VIDEO RESEARCH TOOL 5690 04:26:37,740 --> 04:26:40,310 AND 149 CHILDREN. 5691 04:26:40,310 --> 04:26:43,713 THE MAJORITY WHOM DID NOT HAVE 5692 04:26:43,713 --> 04:26:45,181 VISUAL SEARCH ISSUES. 5693 04:26:45,181 --> 04:26:46,683 ALTOGETHER OVER 900 CHILDREN 5694 04:26:46,683 --> 04:26:53,690 HAVE BEEN ASSISTED. 5695 04:26:53,690 --> 04:26:56,259 CONGRESSION ANALYSIS WAS DONE TO 5696 04:26:56,259 --> 04:26:59,295 LOOK AT TIME FOR EACH AUSTIN 5697 04:26:59,295 --> 04:26:59,595 ASSESSMENT. 5698 04:26:59,595 --> 04:27:02,332 FROM THIS IT WAS CLEAR AGE WAS A 5699 04:27:02,332 --> 04:27:03,199 SIGNIFICANT FACTOR IN THE OVER 5700 04:27:03,199 --> 04:27:06,102 ALL TIME WITH THE OVER ALL TIME 5701 04:27:06,102 --> 04:27:09,305 IN THE SINGLE COLOR FOR EACH 5702 04:27:09,305 --> 04:27:13,643 YEAR OF AGE AND 2.2 FOR THE 5703 04:27:13,643 --> 04:27:16,579 MULTI-COLORED ROUND. 5704 04:27:16,579 --> 04:27:21,517 AND SCATTER PLOT GRAPH ALSO 5705 04:27:21,517 --> 04:27:27,323 SHOWED THE NATURAL AGE RANK 5706 04:27:27,323 --> 04:27:31,427 RANGES IN LINE WITH VISUAL 5707 04:27:31,427 --> 04:27:33,563 MATURATION AND THEY DRLED THE 5708 04:27:33,563 --> 04:27:36,532 THRESHOLDS FOR THE THREE AGE 5709 04:27:36,532 --> 04:27:36,766 GROUPS. 5710 04:27:36,766 --> 04:27:40,570 NOR YOUNGER CHILDREN THE 85 5711 04:27:40,570 --> 04:27:42,305 PERCENTILE WAS USED TO ENSURE 5712 04:27:42,305 --> 04:27:43,539 THE NET WAS CAST WIDE ENOUGH AND 5713 04:27:43,539 --> 04:27:51,114 SHOWED THE BIGGEST RANGE OF 5714 04:27:51,114 --> 04:27:52,181 PERFORMANCE. 5715 04:27:52,181 --> 04:27:53,583 FOR THE EQUITY VARIABLE IT WAS 5716 04:27:53,583 --> 04:27:59,989 SET TO FOUR OUT OF FIVE. 5717 04:27:59,989 --> 04:28:02,258 FOR THE EFFECTIVENESS OF THE 5718 04:28:02,258 --> 04:28:06,596 SCREENING TOOL, 270 CHILDREN 5719 04:28:06,596 --> 04:28:08,731 BETWEEN 5 AND 13 FROM THIS 26 5720 04:28:08,731 --> 04:28:10,199 WERE FOUND TO BE OUTSIDE THE 5721 04:28:10,199 --> 04:28:20,743 NORMATIVE RANGE FOR AT LEAST ONE 5722 04:28:24,213 --> 04:28:25,615 MET THE THRESHOLD AND OTHERS 5723 04:28:25,615 --> 04:28:27,250 WERE FOUND TO HAVE A REASONABLE 5724 04:28:27,250 --> 04:28:29,619 FOR CLINICAL FINDING FOR 5725 04:28:29,619 --> 04:28:32,688 ASSESSMENT RESULT. 5726 04:28:32,688 --> 04:28:34,190 FIVE CHILDREN WERE IDENTIFIED AS 5727 04:28:34,190 --> 04:28:36,492 CVI HIGHLY LIKELY AND FIVE WERE 5728 04:28:36,492 --> 04:28:39,128 IDENTIFIED ADDS MAYBE HAVING CVI 5729 04:28:39,128 --> 04:28:41,697 AND SEVEN CHILDREN IDENTIFIED AS 5730 04:28:41,697 --> 04:28:43,199 HAVING A VISUAL ISSUE WITH 5731 04:28:43,199 --> 04:28:44,767 FURTHER ASSESSMENT NEEDED TO 5732 04:28:44,767 --> 04:28:47,637 DETERMINE THE NATURE OF THE 5733 04:28:47,637 --> 04:28:47,837 ISSUE. 5734 04:28:47,837 --> 04:28:55,111 TO CONFIRM THE DIAGNOSES 5735 04:28:55,111 --> 04:29:00,183 ASSESSMENT WAS DONE IN A 5736 04:29:00,183 --> 04:29:10,493 CLINICAL SETTING. 5737 04:29:36,719 --> 04:29:38,121 THIS ISN'T ANYTHING LIKE THE 5738 04:29:38,121 --> 04:29:40,323 ASSESSMENT FOR DATA AGE 5 TO 18. 5739 04:29:40,323 --> 04:29:42,558 THIS MEANT WE DIDN'T HAVE A GOOD 5740 04:29:42,558 --> 04:29:43,659 STARTING POINT BUT KNOWING HOW 5741 04:29:43,659 --> 04:29:45,428 IMPORTANT IT IS FOR THE FIELD TO 5742 04:29:45,428 --> 04:29:48,931 HAVE AN EFFECTIVE SCREENING TOOL 5743 04:29:48,931 --> 04:29:52,135 WE PERSISTED. 5744 04:29:52,135 --> 04:29:53,636 AFTER CAREFUL CONSIDERATION IT 5745 04:29:53,636 --> 04:29:56,005 WAS THOUGHT THE TESTS WOULD BE 5746 04:29:56,005 --> 04:29:58,574 USED AND THIS WASN'T A PERFECT 5747 04:29:58,574 --> 04:29:59,041 COMPARISON. 5748 04:29:59,041 --> 04:30:03,079 THE ONLY ONES WITH DATA FOR THE 5749 04:30:03,079 --> 04:30:06,382 AGE GROUP FOR THE CHILDREN AGE 5 5750 04:30:06,382 --> 04:30:10,086 TO 8 AND SEPARATE FOR THE OLDER 5751 04:30:10,086 --> 04:30:10,620 CHILDREN. 5752 04:30:10,620 --> 04:30:13,723 THE DIFFERENCE BETWEEN THE TEST 5753 04:30:13,723 --> 04:30:17,860 AND THE AUSTIN SYSTEM WAS THERE 5754 04:30:17,860 --> 04:30:18,895 NO TRIAL COMPONENT. 5755 04:30:18,895 --> 04:30:20,763 I'LL TALK ABOUT WHY IT'S 5756 04:30:20,763 --> 04:30:21,297 IMPORTANT IN THE NEXT TWO 5757 04:30:21,297 --> 04:30:27,270 SLIDES. 5758 04:30:27,270 --> 04:30:29,038 THE NEXT CHARGE IS WE'VE BEEN 5759 04:30:29,038 --> 04:30:32,875 UNABLE TO FIND CHILDREN 5760 04:30:32,875 --> 04:30:34,977 DIAGNOSED WITH CVI AND THE 5761 04:30:34,977 --> 04:30:36,979 COHORT OF CHILDREN HAS NOT BEEN 5762 04:30:36,979 --> 04:30:39,982 IDENTIFIED OR DIAGNOSED. 5763 04:30:39,982 --> 04:30:41,050 IRONICALLY THE VERY REASON THE 5764 04:30:41,050 --> 04:30:46,556 ASSESSMENT WAS NEEDED MADE IT 5765 04:30:46,556 --> 04:30:47,490 CHALLENGING. 5766 04:30:47,490 --> 04:30:50,259 TO OVERCOME THIS CHILDREN HAD 5767 04:30:50,259 --> 04:30:52,295 VISUAL SEARCH ISSUES. 5768 04:30:52,295 --> 04:30:57,733 IN THE END WE ASSESSED 149 5769 04:30:57,733 --> 04:31:00,036 CHILDREN AND THE REST HAD A 5770 04:31:00,036 --> 04:31:02,505 RANGE INCLUDING CVI, 5771 04:31:02,505 --> 04:31:03,940 NEURODIVERSITY, BORN PREMATURE 5772 04:31:03,940 --> 04:31:08,444 AND CEREBRAL PALSY. 5773 04:31:08,444 --> 04:31:09,111 I'M NOT GOING TO GO INTO TOO 5774 04:31:09,111 --> 04:31:11,647 MUCH DETAIL ABOUT THIS TABLE. 5775 04:31:11,647 --> 04:31:13,482 IT CAN WESTBOUND REVIEWED IN THE 5776 04:31:13,482 --> 04:31:15,151 ARTICLE BUT BASICALLY YOU CAN 5777 04:31:15,151 --> 04:31:17,086 SEE THE ASSESSMENT WAS MORE 5778 04:31:17,086 --> 04:31:20,289 SENSITIVE AT PICKING UP CHILDREN 5779 04:31:20,289 --> 04:31:24,961 WHO POTENTIALLY HAD VISUAL 5780 04:31:24,961 --> 04:31:26,662 ISSUES COMPARED TO THE 5781 04:31:26,662 --> 04:31:28,898 CANCELLATION TESTS AND THEY'RE 5782 04:31:28,898 --> 04:31:39,442 NOT THE SAME AS AN ASSESSMENT. 5783 04:31:39,442 --> 04:31:41,711 WE COMPARED INDIVIDUAL IN EACH 5784 04:31:41,711 --> 04:31:43,546 AGE GROUP THAT WERE IDENTIFIED 5785 04:31:43,546 --> 04:31:45,314 AS HAVING A POTENTIAL ISSUE WITH 5786 04:31:45,314 --> 04:31:48,451 A NUMBER OF INDIVIDUALS OUTSIDE 5787 04:31:48,451 --> 04:31:52,455 THE NORMATIVE RANGE FOR THE TIB 5788 04:31:52,455 --> 04:31:52,822 CONSOLATION. 5789 04:31:52,822 --> 04:31:54,657 THE RESULT WAS SHOWN HERE. 5790 04:31:54,657 --> 04:31:57,593 THE BIGGEST TAKEAWAY WAS ONLY 5791 04:31:57,593 --> 04:32:00,096 SLIGHT AGREEMENT BETWEEN THE 5792 04:32:00,096 --> 04:32:02,465 CANCELLATION AND ASSESSMENT AND 5793 04:32:02,465 --> 04:32:03,933 THIS WASN'T STATISTICALLY 5794 04:32:03,933 --> 04:32:04,233 SIGNIFICANT. 5795 04:32:04,233 --> 04:32:09,071 HOWEVER, AS WE KNOW FROM THE 5796 04:32:09,071 --> 04:32:13,609 RESEARCH OUT OF THE HABITS A KEY 5797 04:32:13,609 --> 04:32:16,746 INDICATOR ARE SLOWER RESEARCH 5798 04:32:16,746 --> 04:32:18,447 TIMES, BEING LESS ACCURATE AND 5799 04:32:18,447 --> 04:32:21,617 SLOW RESPONSE TIME TO VISUAL 5800 04:32:21,617 --> 04:32:24,754 STIMULI. 5801 04:32:24,754 --> 04:32:28,224 THERE WAS NO TIME COMPONENT 5802 04:32:28,224 --> 04:32:28,524 WHATSOEVER. 5803 04:32:28,524 --> 04:32:29,625 CHILDREN COULD TAKE AS LONG AS 5804 04:32:29,625 --> 04:32:33,429 THEY WANTED TO COMPLETE THE 5805 04:32:33,429 --> 04:32:36,666 ACTIVITY AND THE DIFFERENCE 5806 04:32:36,666 --> 04:32:43,506 WOULD BE TO ASK OF HAVE 5807 04:32:43,506 --> 04:32:49,612 SIGNIFICANTLY DIFFERENT. 5808 04:32:49,612 --> 04:32:52,348 THE DIAGNOSTIC VALUES WAS ALSO 5809 04:32:52,348 --> 04:32:52,615 EXAMINED. 5810 04:32:52,615 --> 04:32:54,817 THE GROUP INCLUDED INDIVIDUALS 5811 04:32:54,817 --> 04:32:56,919 WITH CONDITIONS KNOWN TO HAVE 5812 04:32:56,919 --> 04:32:58,754 VISUAL ISSUES AS WELL AS 5813 04:32:58,754 --> 04:33:00,723 INDIVIDUALS WITH NO NOBODY 5814 04:33:00,723 --> 04:33:01,023 CONDITIONS. 5815 04:33:01,023 --> 04:33:03,893 YOU CAN SEE THIS PROVIDES 5816 04:33:03,893 --> 04:33:06,195 INTERESTING DATA TO HELP THE 5817 04:33:06,195 --> 04:33:07,196 AUSTIN ASSESSMENT. 5818 04:33:07,196 --> 04:33:09,298 THE TABLE CAN BE REVIEWED ON 5819 04:33:09,298 --> 04:33:14,403 THE SHEET SLIDES OR PUBLISHED 5820 04:33:14,403 --> 04:33:14,970 ARTICLE. 5821 04:33:14,970 --> 04:33:17,173 THE AGREEMENT WAS USED WITH THE 5822 04:33:17,173 --> 04:33:18,941 FOLLOWING RESULTS ALL 5823 04:33:18,941 --> 04:33:19,475 SIGNIFICANT SIGNIFICANT. 5824 04:33:19,475 --> 04:33:22,411 FOR THE AGE GROUP IT WAS A 5825 04:33:22,411 --> 04:33:25,614 MODERATE DIAGNOSTIC VALUE AND 5826 04:33:25,614 --> 04:33:32,388 SENSITIVITY OF 0.85 AND OR THE 9 5827 04:33:32,388 --> 04:33:36,959 TO 12 THE SENSITIVE WAS 0.533 5828 04:33:36,959 --> 04:33:38,227 AND SPECIFICITY OF 1.0. 5829 04:33:38,227 --> 04:33:41,630 FOR THE 13 TO 18 THERE WAS A 5830 04:33:41,630 --> 04:33:48,170 VALUE SENSITIVITY OF 0.7.7 TO 5831 04:33:48,170 --> 04:33:52,074 SPECIFICITY OF 0.8-0. 5832 04:33:52,074 --> 04:33:54,944 AND IT PROVIDED INITIAL 5833 04:33:54,944 --> 04:33:57,413 VALIDATION ABBE A EFFECTIVE 5834 04:33:57,413 --> 04:33:59,315 SCREENING TOOL SBISHING BETWEEN 5835 04:33:59,315 --> 04:34:04,387 CHILDREN WITH PHYSICAL VISION 5836 04:34:04,387 --> 04:34:06,088 AND MENTAL ISSUES HOWEVER, FEAR 5837 04:34:06,088 --> 04:34:08,224 AND VALIDATION IS NEEDED BY 5838 04:34:08,224 --> 04:34:11,527 DOING THIS BE A LARGE COHORT TO 5839 04:34:11,527 --> 04:34:12,061 CHILDREN. 5840 04:34:12,061 --> 04:34:16,999 40 DIAGNOSED WITH CVI. 5841 04:34:16,999 --> 04:34:20,002 WHAT'S NEXT? 5842 04:34:20,002 --> 04:34:23,172 WE HAVE A TRUST CALLED THE 5843 04:34:23,172 --> 04:34:27,777 AUSTIN McDOWELL FOUNDATION AND 5844 04:34:27,777 --> 04:34:29,645 COMPARING A PRE-ORDER OPTION AND 5845 04:34:29,645 --> 04:34:30,946 RELEASED A VIDEO IN THE NEXT 5846 04:34:30,946 --> 04:34:41,190 COUPLE WEEKS. 5847 04:34:42,124 --> 04:34:44,493 THE PERSONAL AD WILL HAVE ACCESS 5848 04:34:44,493 --> 04:34:45,528 TO THE TRAINING OR PRACTICE 5849 04:34:45,528 --> 04:34:46,529 VERSIONS WHICH HAVE DIFFERENT 5850 04:34:46,529 --> 04:34:50,433 THINGS TO ENCOURAGE CHILDREN TO 5851 04:34:50,433 --> 04:34:51,767 PLAY THE GAME. 5852 04:34:51,767 --> 04:34:54,937 THOUGH THIS WILL NEED FURTHER 5853 04:34:54,937 --> 04:34:56,338 RESEARCH, WE CAN BEING PLAYING 5854 04:34:56,338 --> 04:34:57,873 THE ASSESSMENT TO IMPROVE VISUAL 5855 04:34:57,873 --> 04:34:59,074 FUNCTIONS FOR THOSE WHO HAVE HAD 5856 04:34:59,074 --> 04:34:59,708 THE OPPORTUNITY TO DO THIS SO 5857 04:34:59,708 --> 04:35:03,145 FAR. 5858 04:35:03,145 --> 04:35:06,081 WE HAVE DINOSAURS, SPACE AND NEW 5859 04:35:06,081 --> 04:35:06,949 ZEALAND NATURE. 5860 04:35:06,949 --> 04:35:11,153 WE'D LOVE TO GET THE CHILDREN'S 5861 04:35:11,153 --> 04:35:13,556 IDEAS ON WHAT THINGS THEY'D LIKE 5862 04:35:13,556 --> 04:35:18,093 TO PLAY. 5863 04:35:18,093 --> 04:35:22,731 THE PROVISIONAL FEATURE IS FOR 5864 04:35:22,731 --> 04:35:24,800 TEACHERS AND YOU'LL GET ACCESS 5865 04:35:24,800 --> 04:35:27,703 TO THE AP THAT DISPLAYED ALL THE 5866 04:35:27,703 --> 04:35:29,605 SCREENING RESULTS. 5867 04:35:29,605 --> 04:35:33,609 FOR THOSE WHO WANT TO ANALYZE IT 5868 04:35:33,609 --> 04:35:36,312 FURTHER, THERE'S THE ABILITY TO 5869 04:35:36,312 --> 04:35:39,315 DOWNLOAD IT FROM THE DASHBOARD. 5870 04:35:39,315 --> 04:35:41,050 IT WILL HAVE AN ORGANIZATION 5871 04:35:41,050 --> 04:35:42,685 JOBBING DOWN AND THE ABILITY TO 5872 04:35:42,685 --> 04:35:45,621 INVITE USERS. 5873 04:35:45,621 --> 04:35:48,290 I LOG IB WITH THE ORGANIZATION 5874 04:35:48,290 --> 04:35:48,858 LOGIN DATA. 5875 04:35:48,858 --> 04:35:49,992 THANK YOU AGAIN FOR THE 5876 04:35:49,992 --> 04:35:51,827 OPPORTUNITY TO SHARE AN UPDATE 5877 04:35:51,827 --> 04:35:54,396 ON THE AUSTIN ASSESSMENT. 5878 04:35:54,396 --> 04:35:57,633 I'M HOPEFUL IT WILL HELP WITH 5879 04:35:57,633 --> 04:36:03,539 THE IDENTIFICATION LESS THAN 3% 5880 04:36:03,539 --> 04:36:05,608 4% IN MAINSTREAM INDIVIDUAL 5881 04:36:05,608 --> 04:36:09,612 POTENTIALLY IS STUMBLING DUE TO 5882 04:36:09,612 --> 04:36:13,983 UNIDENTIFIED VISUAL ISSUES. 5883 04:36:13,983 --> 04:36:16,886 FOR MORE GO TO OUR WEBSITE OR 5884 04:36:16,886 --> 04:36:20,389 CON ACT ME THROUGH THE E-MAIL 5885 04:36:20,389 --> 04:36:20,623 ADDRESS. 5886 04:36:20,623 --> 04:36:29,665 YOU CAN SLIDE UP TO THE AXIS 5887 04:36:29,665 --> 04:36:31,233 PROVIDE AND DEVELOPED 5888 04:36:31,233 --> 04:36:34,203 INFORMATION AND HERE'S A LINK TO 5889 04:36:34,203 --> 04:36:35,004 THIS AS WELL. 5890 04:36:35,004 --> 04:36:37,273 THANK YOU AGAIN FOR THE 5891 04:36:37,273 --> 04:36:37,573 OPPORTUNITY. 5892 04:36:37,573 --> 04:36:40,876 I'M SEWERER EXCITED ABOUT THE 5893 04:36:40,876 --> 04:36:42,177 AUSTIN ASSESSMENT ACT. 5894 04:36:42,177 --> 04:36:43,712 I'M ALL EXCITED TO HAVE YOU ALL 5895 04:36:43,712 --> 04:36:46,048 HAVE A GO AT IT. 5896 04:36:46,048 --> 04:36:47,850 MANY THANKS. 5897 04:36:47,850 --> 04:36:50,686 >> WE'LL MOVE ON TO THE NEXT 5898 04:36:50,686 --> 04:36:57,560 SECTION, MOOUFLT DISCIP -- 5899 04:37:03,432 --> 04:37:03,933 MULTI-DIAGNOSTIC CRITERIA. 5900 04:37:03,933 --> 04:37:09,605 THE FIRST SPEAKER IS RACHEL 5901 04:37:09,605 --> 04:37:10,806 HAWE. 5902 04:37:10,806 --> 04:37:11,941 UNIVERSITY OF MINNESOTA, SCHOOL 5903 04:37:11,941 --> 04:37:13,876 OF INNESIOLOGY. 5904 04:37:13,876 --> 04:37:24,153 -- KINESIOLOGY. 5905 04:37:58,220 --> 04:37:59,054 THANK YOU EVERYONE FOR HAVING 5906 04:37:59,054 --> 04:37:59,221 ME. 5907 04:37:59,221 --> 04:38:00,623 I'LL TALK ABOUT THE CHALLENGES 5908 04:38:00,623 --> 04:38:08,664 AND HOW TO START DISENTANGLING 5909 04:38:08,664 --> 04:38:11,700 OVERLAPPING DIAGNOSES IN 5910 04:38:11,700 --> 04:38:11,967 CHILDREN. 5911 04:38:11,967 --> 04:38:21,577 FIRST THE DEFINITION OF CEREBRAL 5912 04:38:21,577 --> 04:38:24,113 PALSY IS THE GROUP OF DISORDERS 5913 04:38:24,113 --> 04:38:26,415 OF DEVELOPMENT AND MOVEMENT AND 5914 04:38:26,415 --> 04:38:29,385 THERE'S THE IMPAIRMENT IN 5915 04:38:29,385 --> 04:38:31,320 MOVEMENT AND PASTURE CAUSING 5916 04:38:31,320 --> 04:38:33,255 LIMITATIONS TO NON-PROGRESSIVE 5917 04:38:33,255 --> 04:38:34,623 DISTURBANCES IN THE DEVELOPING 5918 04:38:34,623 --> 04:38:35,691 FETAL OR INSTANT BRAIN. 5919 04:38:35,691 --> 04:38:38,861 THE MOTOR DISORDERS ARE OFTEN 5920 04:38:38,861 --> 04:38:41,130 ACCOMPANIED BY DISTURBANCES IN 5921 04:38:41,130 --> 04:38:42,164 SENSATION, COGNITION, 5922 04:38:42,164 --> 04:38:45,601 COMMUNICATION, PERCEPTION, 5923 04:38:45,601 --> 04:38:51,040 AND/OR BEHAVIOR AND SEIZURE AND 5924 04:38:51,040 --> 04:38:53,609 OVERLAPS AND SENSATION AND 5925 04:38:53,609 --> 04:38:57,613 PERCEPTION. 5926 04:38:57,613 --> 04:38:58,814 WITHIN PERCEPTION THE CAPACITY 5927 04:38:58,814 --> 04:39:02,451 TO INCORPORATE AND DETERMINE 5928 04:39:02,451 --> 04:39:04,853 SENSORY AND/OR COGNITIVE 5929 04:39:04,853 --> 04:39:05,154 INFORMATION. 5930 04:39:05,154 --> 04:39:06,955 THIS MAY BE DUE TO THE SAME 5931 04:39:06,955 --> 04:39:08,257 PRIMARY DISTURBANCE IN THE BRAIN 5932 04:39:08,257 --> 04:39:09,625 THE SAME LESION THAT CAUSED THE 5933 04:39:09,625 --> 04:39:12,995 MOTOR DISORDERS IN CP OFTEN 5934 04:39:12,995 --> 04:39:14,363 OVERLAP ONE THE STRUCTURES IN 5935 04:39:14,363 --> 04:39:15,831 OTHER TALKS OF THE VISUAL SYSTEM 5936 04:39:15,831 --> 04:39:17,566 AND MAY DUE IT THE INITIAL 5937 04:39:17,566 --> 04:39:18,534 DISRUPTION TO THE BRAIN. 5938 04:39:18,534 --> 04:39:20,035 THE OTHER THING THOUGH IS THIS 5939 04:39:20,035 --> 04:39:23,439 COULD COME FROM A SECONDARY 5940 04:39:23,439 --> 04:39:23,739 CONSEQUENCE. 5941 04:39:23,739 --> 04:39:25,574 IF WE HAD MOTOR LIMITATIONS 5942 04:39:25,574 --> 04:39:26,975 CAUSING ACTIVITY LIMITATIONS IN 5943 04:39:26,975 --> 04:39:29,078 A YOUNG CHILD, THAT IS GOING TO 5944 04:39:29,078 --> 04:39:30,145 INTERRUPT THE TYPICAL 5945 04:39:30,145 --> 04:39:33,182 DEVELOPMENT OF OUR PERCEPTION 5946 04:39:33,182 --> 04:39:33,916 AND PERCEPTUAL AWARENESS. 5947 04:39:33,916 --> 04:39:35,718 IF YOU HAVE LIMITED ABILITY TO 5948 04:39:35,718 --> 04:39:37,619 MOVE AND INTERACT WITH THE WORLD 5949 04:39:37,619 --> 04:39:40,322 IN MY RESEARCH SPECIFICALLY WE 5950 04:39:40,322 --> 04:39:41,957 LOOK AT CHILDREN WITH UNILATERAL 5951 04:39:41,957 --> 04:39:43,859 IMPROVEMENT AND MAY CHANGE THEIR 5952 04:39:43,859 --> 04:39:44,893 PERCEPTION OF ONE SIDE OF THE 5953 04:39:44,893 --> 04:39:46,195 WORLD VERSUS THE OTHER. 5954 04:39:46,195 --> 04:39:47,029 THEY MAY BE SECONDARY ISSUES 5955 04:39:47,029 --> 04:39:48,931 WITH PERCEPTION. 5956 04:39:48,931 --> 04:39:51,967 SO I WANT TO START WITH WHAT I 5957 04:39:51,967 --> 04:39:53,769 THOUGHT WAS A SIMPLE MOTOR TASK. 5958 04:39:53,769 --> 04:39:57,740 THIS IS A CENTER-OUT REACHING 5959 04:39:57,740 --> 04:40:04,012 TASK AND HAVE THE WORD VISUAL 5960 04:40:04,012 --> 04:40:05,180 AND INDIVIDUALS START WITH THEIR 5961 04:40:05,180 --> 04:40:07,783 HAND IN A CENTRAL TARGET AND THE 5962 04:40:07,783 --> 04:40:09,451 TARGETS COME ON AND THEY TRY TO 5963 04:40:09,451 --> 04:40:11,120 REACH FOR THAT AS QUICKLY AND 5964 04:40:11,120 --> 04:40:13,322 ACCURATELY AS POSSIBLE. 5965 04:40:13,322 --> 04:40:14,857 WE SEE THE TRAJECTORY THE HAND 5966 04:40:14,857 --> 04:40:16,892 IS GOING. 5967 04:40:16,892 --> 04:40:18,260 WE EMPHASIZE THE COMPONENT. 5968 04:40:18,260 --> 04:40:20,262 WE CAN SEE FOR A TYPICALLY 5969 04:40:20,262 --> 04:40:22,164 DEVELOPING CHILD THEY MAKE NICE 5970 04:40:22,164 --> 04:40:23,799 STRAIGHT LINES AND SMOOTH 5971 04:40:23,799 --> 04:40:24,133 TRAJECTORIES. 5972 04:40:24,133 --> 04:40:25,834 WE ALSO SEE THE RESPONSE TIME IS 5973 04:40:25,834 --> 04:40:27,803 VERY QUICK AND THEY'RE MOVING 5974 04:40:27,803 --> 04:40:29,638 QUICKLY AND SMOOTHLY. 5975 04:40:29,638 --> 04:40:34,209 WE CAN CONTRAST THAT WITH 5976 04:40:34,209 --> 04:40:35,911 CEREBRAL PALSY AND THEY DON'T 5977 04:40:35,911 --> 04:40:37,012 LOOK THE SAME. 5978 04:40:37,012 --> 04:40:39,414 THEY'RE NOT AS SMOOTH AND HAVE 5979 04:40:39,414 --> 04:40:40,649 TROUBLE STABILIZING AND CAN 5980 04:40:40,649 --> 04:40:42,985 BLAME THE MOTOR ABILITY BUT CAN 5981 04:40:42,985 --> 04:40:44,319 ALSO THINK HOW IS THE VISUAL 5982 04:40:44,319 --> 04:40:46,722 SYSTEM CONTRIBUTING TO THIS? 5983 04:40:46,722 --> 04:40:47,856 MAYBE THERE'S ISSUES ORIENTING 5984 04:40:47,856 --> 04:40:49,625 TO THE TARGET WHEN IT FIRST 5985 04:40:49,625 --> 04:40:50,626 COMES ON. 5986 04:40:50,626 --> 04:40:52,394 IT MAY BE SLOWER OR NOT HAPPEN 5987 04:40:52,394 --> 04:40:53,862 TO CERTAIN TARGETS IN SPACE. 5988 04:40:53,862 --> 04:40:55,697 THEY MAY BE ABLE TO LOOK AT THE 5989 04:40:55,697 --> 04:40:57,633 TARGET BUT NOT GET THE 5990 04:40:57,633 --> 04:40:58,734 PERCEPTUAL INFORMATION AND HOW 5991 04:40:58,734 --> 04:41:01,537 FAR I HAVE TO REACH. 5992 04:41:01,537 --> 04:41:05,107 THEY MAY NOT BE ABLE TO KEEP IN 5993 04:41:05,107 --> 04:41:08,277 IN VISION OR DOING COMPENSATORY 5994 04:41:08,277 --> 04:41:15,450 THINGS TO CONTROLLER THEIR ARM 5995 04:41:15,450 --> 04:41:18,220 MOVEMENT AND WHAT DOES THIS LOOK 5996 04:41:18,220 --> 04:41:19,354 LIKE IN REAL LIFE TASK? 5997 04:41:19,354 --> 04:41:21,957 THINK OF A CHILD FOR A TOY IN A 5998 04:41:21,957 --> 04:41:24,193 TOY BOX AND I CAN COME UP WITH 5999 04:41:24,193 --> 04:41:25,627 REASONS BUT THERE'S A VISUAL 6000 04:41:25,627 --> 04:41:26,395 SEARCH COMPONENT AND HOW THEY 6001 04:41:26,395 --> 04:41:29,231 FIND THE TOY AND KEEP THE VISUAL 6002 04:41:29,231 --> 04:41:30,365 ATTENTION OUT IN. 6003 04:41:30,365 --> 04:41:32,334 MAYBE A MORE COMPLEX TASK IS IN 6004 04:41:32,334 --> 04:41:34,770 A SPORTS DOMAIN A MOTOR TASK OF 6005 04:41:34,770 --> 04:41:36,939 BATTING A BALL AND NOW HAVE A 6006 04:41:36,939 --> 04:41:38,006 MOVING OBJECT WE ARE TRYING TO 6007 04:41:38,006 --> 04:41:39,675 INTERCEPT WITH THE BAT. 6008 04:41:39,675 --> 04:41:42,177 HOW DO WE START DISENTANGLING 6009 04:41:42,177 --> 04:41:43,312 WHAT'S MOVEMENT AND WHAT'S 6010 04:41:43,312 --> 04:41:43,545 VISION? 6011 04:41:43,545 --> 04:41:44,546 WE HAVE TO THINK WHAT THE ROLE 6012 04:41:44,546 --> 04:41:45,681 IS IN VISION AND THINKING 6013 04:41:45,681 --> 04:41:49,251 SPECIFICALLY FOR THE TASKS. 6014 04:41:49,251 --> 04:41:50,552 WE FIRST USED VISION FOR ACTION 6015 04:41:50,552 --> 04:41:50,953 SELECTION. 6016 04:41:50,953 --> 04:41:52,521 WHAT TOYS ARE THERE AND WHAT 6017 04:41:52,521 --> 04:41:54,423 HAND DO I REACH WITH, DO I SWING 6018 04:41:54,423 --> 04:41:56,458 THE BAT OR HOLD IT STILL? 6019 04:41:56,458 --> 04:41:57,826 HOW DO WE USE THAT FOR MOVEMENT 6020 04:41:57,826 --> 04:41:59,361 PLANNING AND HOW BIG IS THE TOY 6021 04:41:59,361 --> 04:42:00,696 AND WHERE'S IT LOCATED AN HOW 6022 04:42:00,696 --> 04:42:03,131 FAST IS THE BALL COMING? 6023 04:42:03,131 --> 04:42:05,634 WE USE THE VISION TO GET THE 6024 04:42:05,634 --> 04:42:08,737 ACCURACY OF OUR HAND WHILE 6025 04:42:08,737 --> 04:42:10,138 MOVING TOWARDS SOMETHING OR STAY 6026 04:42:10,138 --> 04:42:11,073 ON THE STRAIGHT PATH. 6027 04:42:11,073 --> 04:42:13,308 AM I MOVING TO THE TARGET? 6028 04:42:13,308 --> 04:42:15,143 IS MY HAND MOVING IN THE RIGHT 6029 04:42:15,143 --> 04:42:15,410 POSITION? 6030 04:42:15,410 --> 04:42:17,145 WITH A MOVING OBJECT WE HAVE 6031 04:42:17,145 --> 04:42:18,480 ADAPT WHILE IN PROGRESS. 6032 04:42:18,480 --> 04:42:21,617 WE HAVE TO CONTINUE MONITORING 6033 04:42:21,617 --> 04:42:27,856 THINGS VISUALLY. 6034 04:42:27,856 --> 04:42:30,592 WE HAVE COMMON VISUAL 6035 04:42:30,592 --> 04:42:32,594 IMPAIRMENTS AND OCULAR-MOTOR 6036 04:42:32,594 --> 04:42:34,730 CONTROL AND SPATIAL ATTENTION, 6037 04:42:34,730 --> 04:42:36,899 DECREASED ANTICIPATORY GAZE. 6038 04:42:36,899 --> 04:42:39,201 OUR EYES ARE TYPICALLY A STEP 6039 04:42:39,201 --> 04:42:40,736 AHEAD OF OUR HANDS. 6040 04:42:40,736 --> 04:42:41,703 IF YEAR ALREADY REACHING FOR 6041 04:42:41,703 --> 04:42:45,974 SOMETHING OUR EYES ARE AHEAD AND 6042 04:42:45,974 --> 04:42:49,912 HELPS WITH MOVEMENT PLANNING AND 6043 04:42:49,912 --> 04:42:52,147 DECREASED IN CEREBRAL PALSY AND 6044 04:42:52,147 --> 04:42:54,082 SOMETIMES THEY USE VISION AS A 6045 04:42:54,082 --> 04:42:54,650 COMPENSATORY STRATEGY. 6046 04:42:54,650 --> 04:42:56,051 THEY DON'T KNOW WHERE THEIR ARM 6047 04:42:56,051 --> 04:42:57,753 IS IN SPACE AND HAVE TO LOOK AT 6048 04:42:57,753 --> 04:42:59,454 IT MORE WHICH MEANS THEY CAN'T 6049 04:42:59,454 --> 04:43:03,926 MONITOR 6050 04:43:03,926 --> 04:43:04,860 JUST TO TALK A LITTLE BIT MORE 6051 04:43:04,860 --> 04:43:06,161 ABOUT VISUAL AND ATTENTION AND 6052 04:43:06,161 --> 04:43:08,597 NEGLECT, THIS IS GAINING SOME 6053 04:43:08,597 --> 04:43:09,698 AWARENESS THAT WE MIGHT HAVE 6054 04:43:09,698 --> 04:43:10,799 ISSUES IN HOW WE'RE ABLE TO 6055 04:43:10,799 --> 04:43:12,100 DIRECT OUR ATTENTION TO WHERE WE 6056 04:43:12,100 --> 04:43:14,069 NEED TO IN THE ENVIRONMENT. 6057 04:43:14,069 --> 04:43:15,470 A SOMEWHAT RECENT PAPER FOUND 6058 04:43:15,470 --> 04:43:22,678 ABOUT 60% OF CHILDREN WITH 6059 04:43:22,678 --> 04:43:26,515 HEMIPARETIC CEREBRAL PALSY HAD 6060 04:43:26,515 --> 04:43:27,082 VISUOSPATIAL IMPAIRTS. 6061 04:43:27,082 --> 04:43:29,051 WE CAN SEE THIS REGARDLESS OF 6062 04:43:29,051 --> 04:43:32,220 WHERE THE LESION IS AND WE SEE 6063 04:43:32,220 --> 04:43:33,188 CHILDREN MIGHT HAVE MORE ISSUES 6064 04:43:33,188 --> 04:43:36,291 IN MOVEMENT AND MORE COMPLEX 6065 04:43:36,291 --> 04:43:37,025 ENVIRONMENTS DUE TO THIS. 6066 04:43:37,025 --> 04:43:38,760 WE ALSO HAVE AN ISSUE WITH 6067 04:43:38,760 --> 04:43:39,761 LEARNED DISUSE AND AGAIN SINCE 6068 04:43:39,761 --> 04:43:41,396 WE HAVE THESE DEVELOPMENTAL 6069 04:43:41,396 --> 04:43:42,597 PATTERNS, IF I'VE LEARNED EARLY 6070 04:43:42,597 --> 04:43:43,899 ON I'M NOT GOING TO MOVE SO MUCH 6071 04:43:43,899 --> 04:43:45,434 WITH THIS LIMB, THAT'S GOING TO 6072 04:43:45,434 --> 04:43:46,535 INFLUENCE HOW I DIRECT MY 6073 04:43:46,535 --> 04:43:48,837 ATTENTION TO MY SPACE. 6074 04:43:48,837 --> 04:43:51,873 THIS IS A CLOCK DRAWN BY AN 6075 04:43:51,873 --> 04:43:53,875 11-YEAR-OLD WITH CEREBRAL PALSY 6076 04:43:53,875 --> 04:43:55,911 WHO NO ONE THOUGHT THEY HAD ANY 6077 04:43:55,911 --> 04:43:57,579 ISSUES AND YET THEY DRAW THE 6078 04:43:57,579 --> 04:43:59,114 CLOCK MISSING HALF OF THE 6079 04:43:59,114 --> 04:43:59,648 NUMBERS ON IT. 6080 04:43:59,648 --> 04:44:01,316 THIS IS NOT A CHILD THAT'S GOING 6081 04:44:01,316 --> 04:44:03,051 TO BE ABLE TO INTERACT WITH THE 6082 04:44:03,051 --> 04:44:04,252 ENVIRONMENT REGARDLESS OF WHAT 6083 04:44:04,252 --> 04:44:05,687 THEIR MOTOR IMPAIRMENTS ARE. 6084 04:44:05,687 --> 04:44:07,756 SO HOW CAN WE START TRYING TO 6085 04:44:07,756 --> 04:44:08,457 DISTINGUISH THESE? 6086 04:44:08,457 --> 04:44:10,926 FIRST ANY CHILD WHO HAS CEREBRAL 6087 04:44:10,926 --> 04:44:13,862 PALSY REALLY NEEDS TO BE HAVING 6088 04:44:13,862 --> 04:44:15,931 A COMPREHENSIVE VISUAL 6089 04:44:15,931 --> 04:44:16,365 ASSESSMENT. 6090 04:44:16,365 --> 04:44:17,833 ALSO WHEN WE LOOK AT OUR 6091 04:44:17,833 --> 04:44:18,700 MOVEMENT ABILITIES, THIS IS 6092 04:44:18,700 --> 04:44:20,202 THINGS THAT PTs AND OTs CAN 6093 04:44:20,202 --> 04:44:22,304 BE DOING, I WAS TRAINED WE NEED 6094 04:44:22,304 --> 04:44:23,205 TO HAVE THEM REACHING FOR 6095 04:44:23,205 --> 04:44:24,339 SOMETHING WITH NO OTHER 6096 04:44:24,339 --> 04:44:25,807 DISTRACTIONS OUT THERE BECAUSE 6097 04:44:25,807 --> 04:44:27,476 WE WANT TO SEE THE BEST POSSIBLE 6098 04:44:27,476 --> 04:44:28,210 REACH AND GRASP. 6099 04:44:28,210 --> 04:44:29,344 THAT'S NOT REAL LIFE AND WE 6100 04:44:29,344 --> 04:44:30,879 MIGHT SEE DUE TO THESE VISUAL 6101 04:44:30,879 --> 04:44:31,813 CHALLENGES THEY'RE GOING TO HAVE 6102 04:44:31,813 --> 04:44:32,914 A LOT MORE CHALLENGES WHEN WE 6103 04:44:32,914 --> 04:44:35,083 MAKE THIS VISUAL XENOMORE 6104 04:44:35,083 --> 04:44:39,121 COMPLEX. 6105 04:44:39,121 --> 04:44:39,488 SCENE MORE 6106 04:44:39,488 --> 04:44:39,955 COMPLEX. 6107 04:44:39,955 --> 04:44:41,323 WE CAN MANIPULATE VISUAL 6108 04:44:41,323 --> 04:44:42,124 INFORMATION AND FEEDBACK. 6109 04:44:42,124 --> 04:44:43,291 CAN YOU SEE WHAT YOU'RE REACHING 6110 04:44:43,291 --> 04:44:44,526 TO,ES CAN YOU SEE YOUR LIMB. 6111 04:44:44,526 --> 04:44:45,927 WE CAN START MANIPULATING THOSE 6112 04:44:45,927 --> 04:44:47,329 TO GET AN ASSESSMENT OF HOW ARE 6113 04:44:47,329 --> 04:44:49,431 THEY USING VISION, WHAT HAPPENS 6114 04:44:49,431 --> 04:44:51,099 WHEN WE MIGHT MANIPULATE THAT. 6115 04:44:51,099 --> 04:44:51,833 THEN WHAT I'M GOING TO TALK 6116 04:44:51,833 --> 04:44:53,168 ABOUT A LITTLE BIT MORE IS HOW 6117 04:44:53,168 --> 04:44:54,903 WE CAN USE GAZE TRACKING DURING 6118 04:44:54,903 --> 04:44:55,704 MOTOR TASKS. 6119 04:44:55,704 --> 04:44:57,839 SO WE CAN HAVE INDIVIDUALS 6120 04:44:57,839 --> 04:45:00,042 WEARING GLASSES BASED GAZE 6121 04:45:00,042 --> 04:45:01,243 TRACKERS AND WE CAN EVEN SEE 6122 04:45:01,243 --> 04:45:02,444 THIS HAS BEEN DONE IN VERY YOUNG 6123 04:45:02,444 --> 04:45:04,279 CHILDREN AS WELL. 6124 04:45:04,279 --> 04:45:05,914 WHAT MY LAB IS DOING IS WE'RE 6125 04:45:05,914 --> 04:45:07,549 COMBINING A LOT OF ROBOTICS WITH 6126 04:45:07,549 --> 04:45:08,784 GAZE TRACKING SO THAT WE CAN 6127 04:45:08,784 --> 04:45:10,652 MEASURE THE MOVEMENTS IN VERY 6128 04:45:10,652 --> 04:45:11,486 SPECIFIC VISUAL ENVIRONMENTS 6129 04:45:11,486 --> 04:45:13,355 WITH THE LIMBS BEING SUPPORTED, 6130 04:45:13,355 --> 04:45:15,157 AND SEEING WHERE THEY'RE LOOKING 6131 04:45:15,157 --> 04:45:16,024 WHILE THEY'RE DOING THIS. 6132 04:45:16,024 --> 04:45:17,092 THIS IS GOING TO SHOW THEM 6133 04:45:17,092 --> 04:45:18,160 HITTING BALLS THAT ARE FALLING, 6134 04:45:18,160 --> 04:45:20,295 SO IT'S A PRETTY HIGHLY 6135 04:45:20,295 --> 04:45:22,898 DEMANDING VISUOSPATIAL TASK AND 6136 04:45:22,898 --> 04:45:23,999 THE GREEN CROSSHAIR IS GOING TO 6137 04:45:23,999 --> 04:45:24,866 SHOW WHERE THEY'RE LOOKING. 6138 04:45:24,866 --> 04:45:26,068 IF WE LOOK AT A TYPICALLY 6139 04:45:26,068 --> 04:45:27,569 DEVELOPING CHILD, THEY'RE EVEN 6140 04:45:27,569 --> 04:45:29,137 TO -- EVEN AS IT GETS FAST, THEY 6141 04:45:29,137 --> 04:45:30,205 TRACK THE OBJECT AND THEY'RE 6142 04:45:30,205 --> 04:45:31,973 ABLE TO HIT THEM, WE SEE THEY 6143 04:45:31,973 --> 04:45:32,841 MOVE BOTH THEIR ARMS. 6144 04:45:32,841 --> 04:45:35,110 OVER HERE IS A CHILD WITH RATE 6145 04:45:35,110 --> 04:45:36,111 HEMIPRE TICK CEREBRAL PALSY. 6146 04:45:36,111 --> 04:45:37,646 IF YOU LOOK THEY'RE JUST NOT 6147 04:45:37,646 --> 04:45:39,347 QUITE AS ORGANIZED IN THEIR 6148 04:45:39,347 --> 04:45:39,848 VISUAL BEHAVIOR. 6149 04:45:39,848 --> 04:45:41,483 THEY'RE STILL MOVING THEIR ARMS, 6150 04:45:41,483 --> 04:45:42,684 THEY'RE GOING TO HIT SOME OF THE 6151 04:45:42,684 --> 04:45:43,885 OBJECTS BUT WE'RE NOT SEEING THE 6152 04:45:43,885 --> 04:45:44,886 SAME ABILITY TO TRACK THEM AND 6153 04:45:44,886 --> 04:45:48,290 THEN HAVE THE ACCURATE HITS. 6154 04:45:48,290 --> 04:45:49,658 WE'VE ALSO DEVELOPED THIS MAZE 6155 04:45:49,658 --> 04:45:50,792 PARADIGM AND IDEA OF THIS IS WE 6156 04:45:50,792 --> 04:45:53,528 WANT TO SEE HOW ARE THEY GOING 6157 04:45:53,528 --> 04:45:56,364 TO INTERPRET THIS VISUAL SCENE 6158 04:45:56,364 --> 04:45:57,599 TO DECIDE HOW TO GUIDE THEIR ARM 6159 04:45:57,599 --> 04:45:58,567 THROUGH IT. 6160 04:45:58,567 --> 04:46:01,203 WHEN I TALK TO ANTICIPATORY 6161 04:46:01,203 --> 04:46:02,170 MOVEMENT, THEY'RE GOING TO START 6162 04:46:02,170 --> 04:46:03,572 AT A START TARGET, THIS IS A 6163 04:46:03,572 --> 04:46:04,706 SLOWED DOWN VIDEO, AND WE'RE 6164 04:46:04,706 --> 04:46:05,874 GOING TO SEE THEIR VISION IS 6165 04:46:05,874 --> 04:46:07,275 AHEAD OF THEIR HAND AND THIS IS 6166 04:46:07,275 --> 04:46:08,844 A TYPICALLY DEVELOPING CHILD, 6167 04:46:08,844 --> 04:46:09,945 THEY DIRECT THEIR ATTENTION 6168 04:46:09,945 --> 04:46:11,146 RIGHT TO WHERE THEY NEED THAT 6169 04:46:11,146 --> 04:46:13,448 EDGE AND THEN THEIR EYES ARE ON 6170 04:46:13,448 --> 04:46:14,416 BEFORE THEIR HAND HAS EVEN 6171 04:46:14,416 --> 04:46:15,317 CROSSED THROUGH THAT, THEY'RE ON 6172 04:46:15,317 --> 04:46:19,588 TO THE NEXT THING. 6173 04:46:19,588 --> 04:46:21,056 WE HAVE TO MORE MONITOR THIS 6174 04:46:21,056 --> 04:46:21,890 POSITION STRATEGY, SO YOU'RE 6175 04:46:21,890 --> 04:46:23,925 GOING TO SEE HERE WE HAVE THIS 6176 04:46:23,925 --> 04:46:24,993 DIFFERENT BEHAVIOR WHERE THEY'RE 6177 04:46:24,993 --> 04:46:27,462 GOING TO LOOK A LIT AHEAD BUT 6178 04:46:27,462 --> 04:46:28,530 THEY'RE GOING TO NEED TO BE 6179 04:46:28,530 --> 04:46:30,165 LOOKING BACK AT THEIR HAND A LOT 6180 04:46:30,165 --> 04:46:31,366 MORE. 6181 04:46:31,366 --> 04:46:32,734 A LITTLE SLOWER MOVEMENT HERE. 6182 04:46:32,734 --> 04:46:34,669 SO THEY LOOK, IT WASN'T QUITE AS 6183 04:46:34,669 --> 04:46:35,837 ORGANIZED, NOW THEY HAVE TO KIND 6184 04:46:35,837 --> 04:46:36,838 OF TRACK THEIR HAND AS THEY'RE 6185 04:46:36,838 --> 04:46:37,906 MOVING THROUGH IT. 6186 04:46:37,906 --> 04:46:39,374 SO A VERY DIFFERENT VISUAL 6187 04:46:39,374 --> 04:46:40,575 BEHAVIOR AND WE'RE NOT SEEING 6188 04:46:40,575 --> 04:46:44,045 THAT REALLY EFFICIENT 6189 04:46:44,045 --> 04:46:45,914 ANTICIPATORY SACCADE STRATEGY. 6190 04:46:45,914 --> 04:46:47,282 SO THIS IS ONE OF THE WAYS WE 6191 04:46:47,282 --> 04:46:48,450 CAN START TO MEASURE WHAT IS 6192 04:46:48,450 --> 04:46:50,619 VISION DOING DURING MOVEMENT AND 6193 04:46:50,619 --> 04:46:52,154 HOW IS THAT VISUAL BEHAVE YR 6194 04:46:52,154 --> 04:46:56,191 DIFFEREBEHAVIORDIFFERENT EVEN BO 6195 04:46:56,191 --> 04:46:58,960 WHAT THE MOTOR BEHAVIOR MIGHT 6196 04:46:58,960 --> 04:46:59,361 BE. 6197 04:46:59,361 --> 04:47:01,229 IT AN EXCITING AREA TO BE 6198 04:47:01,229 --> 04:47:02,764 GETTING INTO TO TRY TO 6199 04:47:02,764 --> 04:47:04,166 DISENTANGLE THESE TWO IN VERY 6200 04:47:04,166 --> 04:47:05,400 COMMON OVERLAPPING DISORDERS. 6201 04:47:05,400 --> 04:47:07,035 I'D LIKE TO ACKNOWLEDGE OUR 6202 04:47:07,035 --> 04:47:07,936 RESEARCH PARTICIPANTS AND 6203 04:47:07,936 --> 04:47:09,871 FAMILIES, MY LAB AT THE 6204 04:47:09,871 --> 04:47:11,773 UNIVERSITY OF MINNESOTA, SOME 6205 04:47:11,773 --> 04:47:14,042 HELP WE'VE GOTTEN AT PENN STATE 6206 04:47:14,042 --> 04:47:16,111 AND WE'VE BEEN FUNDED BY THE 6207 04:47:16,111 --> 04:47:17,045 APTA SECTION OF PEDIATRIC. 6208 04:47:17,045 --> 04:47:17,445 THANK YOU. 6209 04:47:17,445 --> 04:47:23,285 [APPLAUSE] 6210 04:47:23,285 --> 04:47:23,985 >> THANK YOU. 6211 04:47:23,985 --> 04:47:26,388 OUR NEXT SPEAKER IS 6212 04:47:26,388 --> 04:47:27,255 DR. CATHERINE LORD, 6213 04:47:27,255 --> 04:47:29,224 DISTINGUISHED PROFESSOR OF 6214 04:47:29,224 --> 04:47:34,062 PSYCHIATRY AT THE UNIVERSITY OF 6215 04:47:34,062 --> 04:47:34,729 CALIFORNIA LOS ANGELES. 6216 04:47:34,729 --> 04:47:37,265 WE'RE SO FORTUNATE TO HAVE HER 6217 04:47:37,265 --> 04:47:38,233 HERE WITH US TODAY. 6218 04:47:38,233 --> 04:47:40,835 SHE IS REALLY ONE OF THE WORLD 6219 04:47:40,835 --> 04:47:43,271 EXPERTS IN DIAGNOSED AUTISM. 6220 04:47:43,271 --> 04:47:44,639 ANY OF YOU GUYS KNOW ABOUT 6221 04:47:44,639 --> 04:47:46,174 AUTISM, THOSE ARE THE GOLD 6222 04:47:46,174 --> 04:47:47,242 STANDARD DIAGNOSTIC TESTS FOR 6223 04:47:47,242 --> 04:47:50,145 AUTISM SO WE'RE EXCITED TO HEAR 6224 04:47:50,145 --> 04:47:51,580 WHAT SHE HAS TO TELL US ABOUT 6225 04:47:51,580 --> 04:47:53,615 THE OVERLAP OF AUTISM AND CVI. 6226 04:47:53,615 --> 04:47:56,251 >> I AM A VERY AVERAGE-LOOKING 6227 04:47:56,251 --> 04:47:58,787 72-YEAR-OLD WOMAN. 6228 04:47:58,787 --> 04:48:01,189 ALSO I THINK I KNOW LESS ABOUT 6229 04:48:01,189 --> 04:48:02,524 CVI THAN ANYONE ELSE IN THIS 6230 04:48:02,524 --> 04:48:04,125 ROOM. 6231 04:48:04,125 --> 04:48:06,528 AND DESPITE MY SEARCHES, I COULD 6232 04:48:06,528 --> 04:48:08,830 FIND ALMOST NOTHING ABOUT CVI 6233 04:48:08,830 --> 04:48:10,632 AND AUTISM, EVEN THOUGH MANY OF 6234 04:48:10,632 --> 04:48:12,801 THE THINGS I'VE HEARD ALL DAY 6235 04:48:12,801 --> 04:48:14,502 REMIND ME OF AUTISM. 6236 04:48:14,502 --> 04:48:17,038 SO WHAT I'M GOING TO DO IS TALK 6237 04:48:17,038 --> 04:48:18,340 TO YOU ABOUT TWO THINGS. 6238 04:48:18,340 --> 04:48:20,208 ONE IS JUST SOME OF THE ISSUES 6239 04:48:20,208 --> 04:48:22,744 IN DIAGNOSING AUTISM, BECAUSE I 6240 04:48:22,744 --> 04:48:25,046 CERTAINLY HEAR REFRAINS ABOUT 6241 04:48:25,046 --> 04:48:26,348 THE DECISIONS THAT YOU ALL HAVE 6242 04:48:26,348 --> 04:48:30,385 TO MAKE ABOUT HAVING A STANDARD 6243 04:48:30,385 --> 04:48:31,653 DIAGNOSIS OR DEFINITION, I 6244 04:48:31,653 --> 04:48:33,655 SHOULD SAY. 6245 04:48:33,655 --> 04:48:37,392 THAT SOUND VERY FAMILIAR. 6246 04:48:37,392 --> 04:48:40,662 ALTHOUGH BROAD ANALOGIES. 6247 04:48:40,662 --> 04:48:41,763 AND SECOND, I DO HAVE A LITTLE 6248 04:48:41,763 --> 04:48:43,198 BIT OF KNOWLEDGE ABOUT THE 6249 04:48:43,198 --> 04:48:46,568 RELATIONSHIP BETWEEN AUTISM AND 6250 04:48:46,568 --> 04:48:50,438 VISUAL DIFFICULTIES, BUT IT'S 6251 04:48:50,438 --> 04:48:52,274 VERY GROSS, I'M JUST WARNING. 6252 04:48:52,274 --> 04:48:55,310 I DO HAVE TO TELL YOU, I GET 6253 04:48:55,310 --> 04:48:56,444 ROYALTIES FROM DIAGNOSTIC 6254 04:48:56,444 --> 04:48:57,045 INSTRUMENTS. 6255 04:48:57,045 --> 04:48:58,513 I'M NOT TRYING TO SELL YOU 6256 04:48:58,513 --> 04:49:00,615 ANYTHING, I PROMISE. 6257 04:49:00,615 --> 04:49:02,884 AND HAVE FUNDING FROM DIFFERENT 6258 04:49:02,884 --> 04:49:04,052 RESOURCES. 6259 04:49:04,052 --> 04:49:05,487 SO WHAT I'M GOING TO DO IS TALK 6260 04:49:05,487 --> 04:49:08,523 ABOUT GENERAL ISSUES IN AUTISM 6261 04:49:08,523 --> 04:49:09,090 DIAGNOSIS, OVERLAP BETWEEN 6262 04:49:09,090 --> 04:49:10,525 AUTISM AND WHAT I CALL 6263 04:49:10,525 --> 04:49:12,193 BLINDNESS, WHICH PROBABLY I 6264 04:49:12,193 --> 04:49:14,696 SHOULDN'T HAVE, BUT JUST -- I 6265 04:49:14,696 --> 04:49:19,301 BEG YOUR PARD3 PARDON FOR WRONS 6266 04:49:19,301 --> 04:49:20,869 AND THEN DIAGNOSTIC ISSUES THAT 6267 04:49:20,869 --> 04:49:22,037 MIGHT BE RELEVANT. 6268 04:49:22,037 --> 04:49:23,104 I THINK ONE OF THE INTERESTING 6269 04:49:23,104 --> 04:49:24,639 THINGS IS THAT AUTISM IS A VERY 6270 04:49:24,639 --> 04:49:27,342 WIDE SPECTRUM, AND MY 6271 04:49:27,342 --> 04:49:29,010 UNDERSTANDING FROM LOOKING AT 6272 04:49:29,010 --> 04:49:31,079 VISUAL -- CHILDREN WITH VISUAL 6273 04:49:31,079 --> 04:49:32,714 DEFICITS AND ADULTS IS THERE'S 6274 04:49:32,714 --> 04:49:34,816 ALSO A HUGE SPECTRUM, AND I 6275 04:49:34,816 --> 04:49:38,053 THINK EVEN WITHIN CVI, THERE IS 6276 04:49:38,053 --> 04:49:39,621 A BROAD SPECTRUM. 6277 04:49:39,621 --> 04:49:41,589 WE HAVE -- IN AUTISM, WE HAVE 6278 04:49:41,589 --> 04:49:44,192 VARIABILITY IN CASES FROM PEOPLE 6279 04:49:44,192 --> 04:49:46,828 WHO HAVE AUTISM AND SEVERE 6280 04:49:46,828 --> 04:49:47,495 INTELLECTUAL DISABILITY AND 6281 04:49:47,495 --> 04:49:51,766 CANNOT SPEAK FOR THEMSELVES, ALL 6282 04:49:51,766 --> 04:49:53,468 THE WAY UP TO HIGHLY ARTICULATE 6283 04:49:53,468 --> 04:49:56,071 PEOPLE WHO ARE VERY FINANCIALLY 6284 04:49:56,071 --> 04:49:58,006 SUCCESSFUL, THOUGH STILL MAY 6285 04:49:58,006 --> 04:49:59,174 STRUGGLE WITH SOCIAL DEFICITS, 6286 04:49:59,174 --> 04:50:04,346 AND EVERYTHING IN BETWEEN. 6287 04:50:04,346 --> 04:50:06,514 AND WE HAVE GENETIC VARIABILITY 6288 04:50:06,514 --> 04:50:08,316 WHERE WE THOUGHT WE WERE GOING 6289 04:50:08,316 --> 04:50:11,119 TO HAVE THESE MIRACLE THREE 6290 04:50:11,119 --> 04:50:13,054 GENES, NOW WE'VE GOT 400 GENETIC 6291 04:50:13,054 --> 04:50:13,988 PATTERNS, NONE OF WHICH ARE 6292 04:50:13,988 --> 04:50:15,857 SPECIFIC TO AUTISM, IN FACT, AND 6293 04:50:15,857 --> 04:50:20,261 SO WE HAVE TO MAKE SENSE OUT OF 6294 04:50:20,261 --> 04:50:21,296 THAT. 6295 04:50:21,296 --> 04:50:22,731 CLEARLY IT IS A GENETIC 6296 04:50:22,731 --> 04:50:23,932 CONDITION, OR IT IS A GENETIC 6297 04:50:23,932 --> 04:50:24,799 CONDITION IN MANY OF THE PEOPLE 6298 04:50:24,799 --> 04:50:26,301 THAT HAVE IT, MAYBE NOT ALL. 6299 04:50:26,301 --> 04:50:27,369 BUT SOMETHING ELSE IS GOING ON 6300 04:50:27,369 --> 04:50:34,576 AS WELL. 6301 04:50:34,576 --> 04:50:38,213 I HOPE THAT COMES BACK TO CVI. 6302 04:50:38,213 --> 04:50:39,848 WE'RE HOPEFUL THERE ARE GOING TO 6303 04:50:39,848 --> 04:50:42,016 BE FINAL COMMON PATHWAYS IN THE 6304 04:50:42,016 --> 04:50:42,450 BRAIN. 6305 04:50:42,450 --> 04:50:44,018 MAYBE NOT ONE, MAYBE NOT THREE, 6306 04:50:44,018 --> 04:50:45,754 MAYBE UNDER 21, THAT WILL HELP 6307 04:50:45,754 --> 04:50:48,790 US EXPLAIN WHY TWO KIDS -- YOU 6308 04:50:48,790 --> 04:50:50,625 KNOW, ONE IN GUATEMALA AND ONE 6309 04:50:50,625 --> 04:50:52,660 IN, YOU KNOW, NORTHERN 6310 04:50:52,660 --> 04:50:54,996 MASSACHUSETTS WHO LOOK SO 6311 04:50:54,996 --> 04:50:56,865 SIMILAR, YET YOU CAN HAVE TWO 6312 04:50:56,865 --> 04:50:58,500 AUTISTIC PEOPLE FROM THE SAME 6313 04:50:58,500 --> 04:51:00,735 TOWN AND THE SAME FAMILY LOOK SO 6314 04:51:00,735 --> 04:51:05,206 DIFFERENT. 6315 04:51:05,206 --> 04:51:08,843 SO AUTISM, WE'VE NOW REDUCED 6316 04:51:08,843 --> 04:51:10,378 AUTISM TO TWO DOMAINS, AND 6317 04:51:10,378 --> 04:51:12,113 AGAIN, I DON'T KNOW -- IT DID 6318 04:51:12,113 --> 04:51:15,283 SEEM LIKE THIS MAY BE RELEVANT 6319 04:51:15,283 --> 04:51:16,718 TO CVI IN THE SENSE OF TRYING TO 6320 04:51:16,718 --> 04:51:18,953 SORT OUT WHAT'S IN WHAT DOMAIN, 6321 04:51:18,953 --> 04:51:20,221 WHAT DO YOU REALLY NEED, WHAT 6322 04:51:20,221 --> 04:51:21,823 DON'T YOU REALLY NEED. 6323 04:51:21,823 --> 04:51:23,491 I THINK ONE OF THE MOST 6324 04:51:23,491 --> 04:51:27,095 IMPORTANT THINGS ABOUT DSM-V WAS 6325 04:51:27,095 --> 04:51:29,597 THAT WE TOOK LANGUAGE LEVEL OUT 6326 04:51:29,597 --> 04:51:31,366 OF THE DIAGNOSIS OF AUTISM. 6327 04:51:31,366 --> 04:51:35,336 AND THAT WAS FOR TWO REASONS. 6328 04:51:35,336 --> 04:51:36,905 ONE, THE RANGE OF LANGUAGE 6329 04:51:36,905 --> 04:51:38,807 LEVEL, WHICH ACTUALLY OVERLAPS 6330 04:51:38,807 --> 04:51:40,341 GREATLY WITH EXPRESSIVE LANGUAGE 6331 04:51:40,341 --> 04:51:42,977 AND RECEPTIVE LANGUAGE, AND 6332 04:51:42,977 --> 04:51:43,611 BASICALLY INTELLECTUAL 6333 04:51:43,611 --> 04:51:44,612 DISABILITY, ALTHOUGH THEY'RE NOT 6334 04:51:44,612 --> 04:51:48,516 THE SAME, IS HUGE WITHIN AUTISM. 6335 04:51:48,516 --> 04:51:51,186 SO WE SHOULDN'T BE MIXING THAT 6336 04:51:51,186 --> 04:51:51,920 UP. 6337 04:51:51,920 --> 04:51:53,221 SECONDLY, THOUGH, WE WANTED TO 6338 04:51:53,221 --> 04:51:55,557 REALLY PUSH -- AND THIS IS 6339 04:51:55,557 --> 04:51:57,192 PARTICULARLY PHYSICIANS -- TO 6340 04:51:57,192 --> 04:51:59,294 PAY ATTENTION TO LANGUAGE LEVEL. 6341 04:51:59,294 --> 04:52:01,129 BECAUSE IF YOU HAVE SOMEBODY WHO 6342 04:52:01,129 --> 04:52:02,897 CAN'T TALK OR CANNOT UNDERSTAND 6343 04:52:02,897 --> 04:52:05,233 WHAT YOU'RE SAYING, THEY ARE IN 6344 04:52:05,233 --> 04:52:06,701 A VERY DIFFERENT POSITION IN 6345 04:52:06,701 --> 04:52:08,102 LIFE. 6346 04:52:08,102 --> 04:52:10,305 AND WE NEED TO FIGURE OUT WHY IS 6347 04:52:10,305 --> 04:52:14,142 IT THAT THEY CAN'T -- IS IT THAT 6348 04:52:14,142 --> 04:52:17,579 THEY CAN CAN UNDERSTAND WHAT YOE 6349 04:52:17,579 --> 04:52:19,047 SAYING BUT THEY CAN'T TALK? 6350 04:52:19,047 --> 04:52:20,248 WE NEED TO UNDERSTAND WHAT IS 6351 04:52:20,248 --> 04:52:22,417 GOING ON HERE AND THAT SHOULD 6352 04:52:22,417 --> 04:52:23,785 NOT BE LUMPED WITH AUTISM. 6353 04:52:23,785 --> 04:52:25,420 AND THAT DOES BECOME IMPORTANT 6354 04:52:25,420 --> 04:52:25,854 WITH CVI. 6355 04:52:25,854 --> 04:52:27,589 I DON'T HAVE A SENSE OF HOW -- I 6356 04:52:27,589 --> 04:52:29,891 MEAN -- WELL, I HAVE A VERY GOOD 6357 04:52:29,891 --> 04:52:32,627 SENSE OF HOW LIMITED STANDARD IQ 6358 04:52:32,627 --> 04:52:34,362 TESTS ARE WITH KIDS WHO HAVE 6359 04:52:34,362 --> 04:52:35,697 VISUAL IMPAIRMENTS. 6360 04:52:35,697 --> 04:52:37,432 SO THE TROUBLE IS, YOU CAN'T 6361 04:52:37,432 --> 04:52:40,301 JUST COUNT ON THAT FOR ANSWERING 6362 04:52:40,301 --> 04:52:40,835 YOUR QUESTIONS. 6363 04:52:40,835 --> 04:52:46,274 WITBUT I THINK BACK TO 6364 04:52:46,274 --> 04:52:46,908 DR. RAVENSCROFT, YOU'VE GOT TO 6365 04:52:46,908 --> 04:52:48,610 HAVE A WAY OF ELIMINATING 6366 04:52:48,610 --> 04:52:50,245 CERTAIN HYPOTHESES ABOUT WHAT'S 6367 04:52:50,245 --> 04:52:51,579 GOING ON OR AT LEAST ATTENDING 6368 04:52:51,579 --> 04:52:54,048 TO IS THIS CHILD BEHIND IN 6369 04:52:54,048 --> 04:52:57,385 ABSOLUTELY EVERY WAY, OR IS THIS 6370 04:52:57,385 --> 04:52:58,686 CHILD BEHIND IN FOUR THINGS OR 6371 04:52:58,686 --> 04:53:02,590 SIX THINGS, AS WELL AS THE CVI. 6372 04:53:02,590 --> 04:53:04,259 AND SOMEHOW, THAT'S GOT TO BE -- 6373 04:53:04,259 --> 04:53:05,960 I THINK IF YOU'RE SETTING UP 6374 04:53:05,960 --> 04:53:06,794 REGISTRY, YOU'VE GOT TO FIGURE 6375 04:53:06,794 --> 04:53:07,695 OUT A WAY TO GET THAT 6376 04:53:07,695 --> 04:53:09,697 INFORMATION. 6377 04:53:09,697 --> 04:53:11,432 THIS IS NOT SAYING THAT CVI 6378 04:53:11,432 --> 04:53:12,100 DOESN'T EXIST. 6379 04:53:12,100 --> 04:53:13,535 JUST LIKE I WOULDN'T SAY AUTISM 6380 04:53:13,535 --> 04:53:15,236 DOESN'T EXIST. 6381 04:53:15,236 --> 04:53:16,571 BUT WE HAVE YEARS OF RESEARCH 6382 04:53:16,571 --> 04:53:19,240 THAT IS PRETTY WORTHLESS BECAUSE 6383 04:53:19,240 --> 04:53:22,610 WE WERE COMPARING SEVERELY 6384 04:53:22,610 --> 04:53:24,879 INTELLECTUALLY DISABLED AUTISTIC 6385 04:53:24,879 --> 04:53:26,981 KIDS TO WHATEVER NORMALLY 6386 04:53:26,981 --> 04:53:28,716 DEVELOPING TYPICAL KIDS ARE, AND 6387 04:53:28,716 --> 04:53:29,717 THAT DOESN'T TELL US ABOUT 6388 04:53:29,717 --> 04:53:30,151 AUTISM. 6389 04:53:30,151 --> 04:53:33,655 SO WE NEED TO KNOW THAT. 6390 04:53:33,655 --> 04:53:37,959 SECONDLY, WE HAVE THESE TWO 6391 04:53:37,959 --> 04:53:38,860 RELATIVELY SEPARATE DOMAINS, AND 6392 04:53:38,860 --> 04:53:41,195 I DON'T HAVE A SENSE OF CVI 6393 04:53:41,195 --> 04:53:42,430 ENOUGH TO KNOW IF THAT'S TRUE, 6394 04:53:42,430 --> 04:53:44,165 BUT THEY ARE NOT ACCOUNTED FOR 6395 04:53:44,165 --> 04:53:45,066 BY EACH OTHER. 6396 04:53:45,066 --> 04:53:50,004 THEY ARE CORRELATED, BUT ONE IS 6397 04:53:50,004 --> 04:53:51,739 HAVING TO DO WITH SOCIAL 6398 04:53:51,739 --> 04:53:52,840 COMMUNICATION, AND THAT, WE 6399 04:53:52,840 --> 04:53:55,243 BASICALLY BROKE DOWN INTO THREE 6400 04:53:55,243 --> 04:53:57,345 PART. 6401 04:53:57,345 --> 04:53:58,413 NON-VERBAL COMMUNICATION, SO IT 6402 04:53:58,413 --> 04:53:59,781 MEANS FACIAL EXPRESSION, ALL THE 6403 04:53:59,781 --> 04:54:01,482 KINDS OF THINGS THAT I THINK 6404 04:54:01,482 --> 04:54:03,251 YOUR KIDS HAVE TROUBLE WITH. 6405 04:54:03,251 --> 04:54:05,553 FACIAL EXPRESSIONS, I CONTACT, 6406 04:54:05,553 --> 04:54:08,856 HOW YOU HOLD YOUR BODY, 6407 04:54:08,856 --> 04:54:10,224 GESTURES, RECIPROCAL 6408 04:54:10,224 --> 04:54:10,992 INTERACTIONS, WHICH IS JUST THE 6409 04:54:10,992 --> 04:54:12,594 IDEA THAT IF I DROP SOMETHING 6410 04:54:12,594 --> 04:54:13,861 RIGHT AT YOUR FEET, DO YOU PICK 6411 04:54:13,861 --> 04:54:15,263 IT UP? 6412 04:54:15,263 --> 04:54:16,898 IF I START LOOKING OVER THERE, 6413 04:54:16,898 --> 04:54:20,201 DO YOU START LOOKING OVER THERE? 6414 04:54:20,201 --> 04:54:22,036 AN INTERACTION WITH SOMEBODY ON 6415 04:54:22,036 --> 04:54:23,004 A MOMENTARY BASIS. 6416 04:54:23,004 --> 04:54:24,439 AND THEN THE THIRD THING REALLY 6417 04:54:24,439 --> 04:54:26,674 HAS TO DO WITH RELATIONSHIPS. 6418 04:54:26,674 --> 04:54:28,810 FORMING RELATIONSHIPS OVER TIME, 6419 04:54:28,810 --> 04:54:31,312 WHICH ALSO INCLUDES SOME SENSE 6420 04:54:31,312 --> 04:54:31,879 OF CONTEXT. 6421 04:54:31,879 --> 04:54:33,414 DO YOU HAVE ANY IDEA OF WHAT IT 6422 04:54:33,414 --> 04:54:37,018 IS TO BE A WORKER, TO HAVE A 6423 04:54:37,018 --> 04:54:38,419 JOB, YOU KNOW, TO HAVE SOMETHING 6424 04:54:38,419 --> 04:54:44,926 THAT YOU NEED TO DO OR A HOST, 6425 04:54:44,926 --> 04:54:50,898 VARIOUS ROLES THAT WE HAVE. 6426 04:54:50,898 --> 04:54:51,866 THAT'S ONE CATEGORY. 6427 04:54:51,866 --> 04:54:54,202 ANOTHER CATEGORY IS THIS REAL 6428 04:54:54,202 --> 04:54:54,636 GRAB BAG. 6429 04:54:54,636 --> 04:54:57,939 I'M WAITING FOR SLEEFER BIOLOGY 6430 04:54:57,939 --> 04:55:01,142 TO ANSWER IT FOR US, BUT WHY ARE 6431 04:55:01,142 --> 04:55:03,144 REPETITIVE BEHAVIORS YOU SEE 6432 04:55:03,144 --> 04:55:04,779 LIKE FLAPPING, YOU CERTAINLY SEE 6433 04:55:04,779 --> 04:55:06,748 IN KIDS WITH VISUAL IMPAIRMENTS, 6434 04:55:06,748 --> 04:55:07,615 PEERING OUT OF THE CORNER OF 6435 04:55:07,615 --> 04:55:10,918 YOUR EYE, BEING BOTHERED BY 6436 04:55:10,918 --> 04:55:11,552 TAGS, SMELLING THINGS AS FAR AS 6437 04:55:11,552 --> 04:55:13,855 WE CAN TELL HAVE NO ODOR, WHY 6438 04:55:13,855 --> 04:55:16,057 ARE THOSE THINGS RELATED TO 6439 04:55:16,057 --> 04:55:18,326 GETTING STUCK ON CERTAIN TOPICS, 6440 04:55:18,326 --> 04:55:21,195 LIKE SCOTTISH CLANS, YOU KNOW, 6441 04:55:21,195 --> 04:55:25,033 OR EDITORS OF NEWSPAPERS, OR 6442 04:55:25,033 --> 04:55:26,901 SUBWAYS. 6443 04:55:26,901 --> 04:55:29,103 SO WE HAVE THIS GROUP OF THINGS 6444 04:55:29,103 --> 04:55:31,673 THAT REALLY DON'T HAVE MUCH IN 6445 04:55:31,673 --> 04:55:36,344 COMMON EXCEPT SOMETHING ABOUT 6446 04:55:36,344 --> 04:55:37,378 REPETITION THAT APPEAR IN THE 6447 04:55:37,378 --> 04:55:39,347 SAME PEOPLE WHO HAVE THE MOST 6448 04:55:39,347 --> 04:55:41,215 SEVERE SOCIAL DEFICITS. 6449 04:55:41,215 --> 04:55:42,850 AND SOMEHOW AS MUCH AS WE TRY TO 6450 04:55:42,850 --> 04:55:45,620 ACCOUNT FOR ONE OR THE OTHER, 6451 04:55:45,620 --> 04:55:46,788 THE TRAJECTORIES ARE DIFFERENT 6452 04:55:46,788 --> 04:55:48,289 OF THESE THINGS. 6453 04:55:48,289 --> 04:55:51,693 THEY STILL KEEP COMING UP 6454 04:55:51,693 --> 04:55:53,294 TOGETHER. 6455 04:55:53,294 --> 04:55:54,328 SO THAT'S SOMETHING TO THINK 6456 04:55:54,328 --> 04:55:55,530 ABOUT FOR CVI AND I DON'T EVEN 6457 04:55:55,530 --> 04:56:00,435 KNOW WHERE TO START. 6458 04:56:00,435 --> 04:56:02,103 I THINK ANOTHER THING PEOPLE 6459 04:56:02,103 --> 04:56:04,038 HAVE ALREADY SAID IS AUTISM IS A 6460 04:56:04,038 --> 04:56:05,606 DEVELOPMENTAL DISORDER, AND 6461 04:56:05,606 --> 04:56:08,242 HAVING IT CHANGES THE INPUT THAT 6462 04:56:08,242 --> 04:56:09,444 KIDS GET, BECAUSE THEY DON'T 6463 04:56:09,444 --> 04:56:10,611 LOOK RIGHT AWAY. 6464 04:56:10,611 --> 04:56:13,481 IF SOMEBODY MAKES A NOISE. 6465 04:56:13,481 --> 04:56:14,949 THEY DON'T SMILE AS EASILY, AND 6466 04:56:14,949 --> 04:56:16,384 SO PEOPLE DON'T SMILE AT THEM AS 6467 04:56:16,384 --> 04:56:18,786 MUCH. 6468 04:56:18,786 --> 04:56:21,556 SO AT BOTH EFFECTS WHAT THEY 6469 04:56:21,556 --> 04:56:23,191 ATTEND TO BUT ALSO WHAT OTHER 6470 04:56:23,191 --> 04:56:23,958 PEOPLE GET FROM THEM. 6471 04:56:23,958 --> 04:56:25,626 AND THAT IS LIKELY TO HAVE AN 6472 04:56:25,626 --> 04:56:26,360 EFFECT. 6473 04:56:26,360 --> 04:56:27,695 I PUT THIS SLIDE UP BECAUSE THE 6474 04:56:27,695 --> 04:56:28,896 LITTLE GIRL ON THE RIGHT IS A 6475 04:56:28,896 --> 04:56:30,932 VERY AUTISTIC YOUNG GIRL WHO 6476 04:56:30,932 --> 04:56:34,502 HAPPENED TO HAVE THREE WONDERFUL 6477 04:56:34,502 --> 04:56:35,903 SISTERS, AND A GREAT SET OF 6478 04:56:35,903 --> 04:56:37,205 PARENTS, AND THEY GOT HER INTO 6479 04:56:37,205 --> 04:56:40,675 THIS VERY ROCKY AWFUL SENSORY 6480 04:56:40,675 --> 04:56:43,444 BOAT, HAPPILY, BECAUSE THEY DID 6481 04:56:43,444 --> 04:56:45,279 IT VERY SYSTEMATICALLY, AND SHE 6482 04:56:45,279 --> 04:56:46,614 HAS THOSE SISTERS. 6483 04:56:46,614 --> 04:56:48,149 SO MY POINT HERE IS, THIS IS 6484 04:56:48,149 --> 04:56:55,223 WHERE WE CAN INTERVENE W, WE CAN 6485 04:56:55,223 --> 04:56:57,425 GIVE KIDS BETTER OPPORTUNITIES, 6486 04:56:57,425 --> 04:57:01,162 WE CAN -- THAT DOES GIVE US HOPE 6487 04:57:01,162 --> 04:57:02,997 BECAUSE I THINK WE CAN DO A MUCH 6488 04:57:02,997 --> 04:57:05,733 BETTER JOB OF HELPING KIDS USE 6489 04:57:05,733 --> 04:57:16,010 THEIR STRENGTHS. 6490 04:57:19,881 --> 04:57:21,582 I THINK ANOTHER THING TO THINK 6491 04:57:21,582 --> 04:57:25,086 ABOUT FOR CVI IS THAT AUTISM IS 6492 04:57:25,086 --> 04:57:26,788 DEFINED BOTH BY THE PRESENCE OF 6493 04:57:26,788 --> 04:57:30,658 CERTAIN BEHAVIORS, AND THOSE ARE 6494 04:57:30,658 --> 04:57:31,893 THE THINGS WE THINK ABOUT THAT 6495 04:57:31,893 --> 04:57:33,161 ARE MOST OBSERVABLE, LIKE 6496 04:57:33,161 --> 04:57:34,162 FLAPPING OR LOOKING OUT OF THE 6497 04:57:34,162 --> 04:57:35,596 CORNER OF YOUR EYE. 6498 04:57:35,596 --> 04:57:38,099 BUT PROBABLY IN THE LONG RUN 6499 04:57:38,099 --> 04:57:39,133 WHAT MAKES A BIGGER DIFFERENCE 6500 04:57:39,133 --> 04:57:44,539 IS THE ABSENCE OR DIMINUTION OF 6501 04:57:44,539 --> 04:57:45,673 OTHER BEHAVIORS LIKE QUICK 6502 04:57:45,673 --> 04:57:46,407 ATTENTION TO PEOPLE. 6503 04:57:46,407 --> 04:57:48,276 AND WE NEED TO REMEMBER BOTH OF 6504 04:57:48,276 --> 04:57:49,811 THOSE THINGS, BECAUSE IT'S 6505 04:57:49,811 --> 04:57:52,346 REALLY -- WHEN YOU START MAKING 6506 04:57:52,346 --> 04:57:54,315 LISTS, IT'S FAR EASIER TO MAKE 6507 04:57:54,315 --> 04:57:55,683 LISTS AND GET RELIABLE FOR THE 6508 04:57:55,683 --> 04:57:59,020 PREBSPRESENCE OF THINGS, BUT THE 6509 04:57:59,020 --> 04:58:00,121 THINGS CHANGE MORE 6510 04:58:00,121 --> 04:58:02,290 DEVELOPMENTALLY, AND THEY HAVE A 6511 04:58:02,290 --> 04:58:04,926 MUCH MORE MINOR IMPACT ON 6512 04:58:04,926 --> 04:58:05,660 PEOPLE'S LIVES. 6513 04:58:05,660 --> 04:58:07,428 EVEN IF YOU REALLY HAVE TO FLAP 6514 04:58:07,428 --> 04:58:08,963 WHEN YOU'RE 30, YOU CAN GO IN 6515 04:58:08,963 --> 04:58:10,164 THE BATHROOM AND FLAP. 6516 04:58:10,164 --> 04:58:12,466 YOU CAN LEARN THAT. 6517 04:58:12,466 --> 04:58:14,769 SO IT ALSO MEANS THAT WHEN WE 6518 04:58:14,769 --> 04:58:16,404 MEASURE THINGS, WE HAVE TO HAVE 6519 04:58:16,404 --> 04:58:16,971 CONTEXT. 6520 04:58:16,971 --> 04:58:19,473 I THINK THAT'S BEEN A THEME 6521 04:58:19,473 --> 04:58:20,141 TODAY TOO. 6522 04:58:20,141 --> 04:58:22,310 THE IDEA THAT YOU CAN'T -- YOU 6523 04:58:22,310 --> 04:58:23,845 WANT TO GET INFORMATION OVER 6524 04:58:23,845 --> 04:58:25,479 LOTS OF DIFFERENT SOURCES. 6525 04:58:25,479 --> 04:58:27,582 THIS IS THE CVI -- I'M GOING TO 6526 04:58:27,582 --> 04:58:28,649 FORGET THE NAME OF THE 6527 04:58:28,649 --> 04:58:30,618 INTERVIEW, BUT THE INTERVIEW, 6528 04:58:30,618 --> 04:58:32,486 THE OBSERVATION, BUT IT CAN'T BE 6529 04:58:32,486 --> 04:58:33,588 INDEPENDENT OF CONTEXT. 6530 04:58:33,588 --> 04:58:35,356 BECAUSE I CAN CREATE A CONTEXT 6531 04:58:35,356 --> 04:58:37,391 THAT ALL OF YOU WOULD LOOK 6532 04:58:37,391 --> 04:58:38,059 AUTISTIC IN. 6533 04:58:38,059 --> 04:58:41,128 I COULD ALSO CREATE A CONTEXT, 6534 04:58:41,128 --> 04:58:45,266 EVERY KID I SEE WHO LOOKS NORMAL 6535 04:58:45,266 --> 04:58:45,900 FOR 20 SECONDS SOMEWHERE IN 6536 04:58:45,900 --> 04:58:46,167 THERE. 6537 04:58:46,167 --> 04:58:48,336 SO WE HAVE TO BE THINKING ABOUT 6538 04:58:48,336 --> 04:58:50,438 CONTEXT, AND I THINK FOR THE 6539 04:58:50,438 --> 04:58:51,372 PHYSICIAN, YOU CREATE CONTEXT 6540 04:58:51,372 --> 04:58:53,140 ALL THE TIME. 6541 04:58:53,140 --> 04:58:54,709 AND THAT'S WHAT A LOT OF OUR 6542 04:58:54,709 --> 04:58:57,445 BLOOD TESTS ARE ADD THINGS. 6543 04:58:57,445 --> 04:58:58,179 AND THINGS. 6544 04:58:58,179 --> 04:58:59,280 BUT OFTEN WHEN WE GET TO MORE 6545 04:58:59,280 --> 04:59:00,514 SOCIAL THINGS, WE FORGET THAT 6546 04:59:00,514 --> 04:59:01,883 AND WE THINK ABOUT THE CONTEXT 6547 04:59:01,883 --> 04:59:03,851 OF LIKE AN OFFICE VISIT. 6548 04:59:03,851 --> 04:59:04,752 >> WE HAVE ONE MINUTE. 6549 04:59:04,752 --> 04:59:05,386 >> OKAY. 6550 04:59:05,386 --> 04:59:07,822 SO I THINK WE GET INDIVIDUAL 6551 04:59:07,822 --> 04:59:08,789 DIFFERENCES AND WE'VE TALKED 6552 04:59:08,789 --> 04:59:11,525 ABOUT THIS ALREADY, IN SEVERITY 6553 04:59:11,525 --> 04:59:13,928 OF SYMPTOMS, IN FAMILIES' 6554 04:59:13,928 --> 04:59:15,263 PRIORITY AND RESOURCES, WE 6555 04:59:15,263 --> 04:59:16,998 HAVEN'T TALKED ABOUT THAT SO 6556 04:59:16,998 --> 04:59:18,299 MUCH TODAY, BUT CERTAINLY IN 6557 04:59:18,299 --> 04:59:20,167 AUTISM. 6558 04:59:20,167 --> 04:59:21,602 THERE ARE FAMILIES THAT WANT TO 6559 04:59:21,602 --> 04:59:22,470 PROTECT THEIR KIDS, FAMILIES 6560 04:59:22,470 --> 04:59:24,272 THAT WANT TO PUSH THEIR KIDS, 6561 04:59:24,272 --> 04:59:26,507 THERE'S FAMILIES THAT HAVE NO 6562 04:59:26,507 --> 04:59:28,376 TIME AND ARE DESPERATE. 6563 04:59:28,376 --> 04:59:31,212 AND IN OTHER ASPECTS OF 6564 04:59:31,212 --> 04:59:31,779 DEVELOPMENT, BECAUSE YOU'RE 6565 04:59:31,779 --> 04:59:34,048 GOING TO HAVE KIDS WHO, AS I 6566 04:59:34,048 --> 04:59:35,917 SAID, HAVE CP OR ARE VERY SMART 6567 04:59:35,917 --> 04:59:38,653 OR NOT VERY SMART. 6568 04:59:38,653 --> 04:59:40,388 AND AT LEAST IN AUTISM, THE 6569 04:59:40,388 --> 04:59:42,590 AVAILABILITY OF MEDICAL 6570 04:59:42,590 --> 04:59:43,991 TREATMENTS, MEDICINES, CAN MAKE 6571 04:59:43,991 --> 04:59:45,326 A REAL DIFFERENCE, BUT THEY 6572 04:59:45,326 --> 04:59:51,732 DON'T TREAT THE AUTISM. 6573 04:59:51,732 --> 04:59:53,434 SO BURNING ISSUES, HOW BROAD 6574 04:59:53,434 --> 04:59:55,069 SHOULD THE DIAGNOSIS BE? 6575 04:59:55,069 --> 04:59:57,438 DO YOU WANT TO HAVE SOMETHING 6576 04:59:57,438 --> 04:59:59,040 THAT'S VERY SENSITIVE BUT MAYBE 6577 04:59:59,040 --> 05:00:01,208 NOT VERY SPECIFIC? 6578 05:00:01,208 --> 05:00:04,345 CAN YOU DO SYMPTOM COUNTS? 6579 05:00:04,345 --> 05:00:05,546 IN AUTISM, MOSTLY NOT, BECAUSE 6580 05:00:05,546 --> 05:00:06,881 THEN WHAT YOU GET ARE 6581 05:00:06,881 --> 05:00:08,249 DEVELOPMENTAL LEVELS. 6582 05:00:08,249 --> 05:00:09,283 CAN NEUROBIOLOGICAL MARKERS 6583 05:00:09,283 --> 05:00:09,917 HELP? 6584 05:00:09,917 --> 05:00:12,119 WE HOPE SO. 6585 05:00:12,119 --> 05:00:14,322 BUT SO FAR, THEY HAVEN'T, WITH 6586 05:00:14,322 --> 05:00:17,158 MILLIONS OF DOLLARS IN THERE, 6587 05:00:17,158 --> 05:00:18,459 NOT ONE NEUROBIOLOGICAL MARKER 6588 05:00:18,459 --> 05:00:21,996 HAS REALLY MADE A DIFFERENCE. 6589 05:00:21,996 --> 05:00:23,497 WHERE DOES IMPAIRMENT FIT? 6590 05:00:23,497 --> 05:00:24,432 I THINK SOME OF THE SPEAKERS 6591 05:00:24,432 --> 05:00:25,266 HAVE TALKED ABOUT THAT. 6592 05:00:25,266 --> 05:00:26,734 AND THEN THE SOCIAL JUSTICE OF 6593 05:00:26,734 --> 05:00:28,669 WHO ARE WE TALKING ABOUT, WHITE 6594 05:00:28,669 --> 05:00:31,238 UPPER MIDDLE CLASS KIDS? 6595 05:00:31,238 --> 05:00:32,573 ALL RIGHT. 6596 05:00:32,573 --> 05:00:34,442 I'M JUST GOING TO SAY AND THEN 6597 05:00:34,442 --> 05:00:37,611 I'LL STOP THAT, I MEAN, THE 6598 05:00:37,611 --> 05:00:39,013 OVERLAP BETWEEN AUTISM AND 6599 05:00:39,013 --> 05:00:41,115 VISUAL IMPAIRMENTS IS VERY 6600 05:00:41,115 --> 05:00:41,449 INTERESTING. 6601 05:00:41,449 --> 05:00:44,618 FOR YEARS, PEOPLE HAVE SAID THAT 6602 05:00:44,618 --> 05:00:45,586 KIDS -- AND MAYBE THESE AREN'T 6603 05:00:45,586 --> 05:00:48,522 THE KIDS WITH CVI, BUT THAT KIDS 6604 05:00:48,522 --> 05:00:49,857 WHO -- PARTICULARLY KID WHO ARE 6605 05:00:49,857 --> 05:00:52,727 TRULY BLIND OR REALLY CAN'T SEE 6606 05:00:52,727 --> 05:00:54,662 DO A LOT OF THINGS THAT LOOK 6607 05:00:54,662 --> 05:00:56,197 LIKE AUTISTIC KIDS. 6608 05:00:56,197 --> 05:00:59,834 MANY OF THOSE DECREASED OVER 6609 05:00:59,834 --> 05:01:00,401 TIME. 6610 05:01:00,401 --> 05:01:03,738 MANY OF THOSE KIDS GET CALLED 6611 05:01:03,738 --> 05:01:07,575 AUTISTIC, AS FAR AS I CAN 6612 05:01:07,575 --> 05:01:09,543 UNDERSTAND, IF KIDS TRULY CANNOT 6613 05:01:09,543 --> 05:01:11,846 SEE AT ALL AND HAVE SEVERE 6614 05:01:11,846 --> 05:01:12,813 INTELLECTUAL DISABILITY, THE 6615 05:01:12,813 --> 05:01:14,482 CHANCES OF THEM GETTING CALLED 6616 05:01:14,482 --> 05:01:16,751 AUTISTIC ARE SO HIGH. 6617 05:01:16,751 --> 05:01:20,488 ONCE THEY CAN TALK, IT 6618 05:01:20,488 --> 05:01:22,289 BECOMES -- IT'S A DEVELOPMENTAL 6619 05:01:22,289 --> 05:01:23,224 PHENOMENON WHERE YOU MAY HAVE 6620 05:01:23,224 --> 05:01:24,959 KIDS WHO, FOR EXAMPLE, REFER TO 6621 05:01:24,959 --> 05:01:27,161 THEMSELVES AS YOU OR BY NAME, 6622 05:01:27,161 --> 05:01:29,263 WHEN THEIR 5, BUT GROW OUT OF 6623 05:01:29,263 --> 05:01:29,563 IT. 6624 05:01:29,563 --> 05:01:32,933 SO WE HAVE TO BE VERY CAREFUL. 6625 05:01:32,933 --> 05:01:34,702 AND WE ALSO HAVE THINGS THAT ARE 6626 05:01:34,702 --> 05:01:36,437 PROBABLY JUST LEARNED, BECAUSE, 6627 05:01:36,437 --> 05:01:39,073 AGAIN, SORT OF RELATED TO CVI, 6628 05:01:39,073 --> 05:01:42,343 IF YOU PICK UP SOCIAL CUES, NO 6629 05:01:42,343 --> 05:01:43,611 WONDER YOU'RE MISSING THE POINT 6630 05:01:43,611 --> 05:01:44,311 SOMETIMES. 6631 05:01:44,311 --> 05:01:45,846 SO LET ME STOP THERE SO I'M NOT 6632 05:01:45,846 --> 05:01:48,682 USING UP OTHER PEOPLE'S TIME. 6633 05:01:48,682 --> 05:01:53,421 AND I CAN'T EACH E EVEN GET -- . 6634 05:01:53,421 --> 05:01:55,623 AND JUST TO SAY, I THINK IN CVI 6635 05:01:55,623 --> 05:01:56,457 AS WELL AS AUTISM THAT DIAGNOSIS 6636 05:01:56,457 --> 05:01:57,224 IS THE FIRST STEP. 6637 05:01:57,224 --> 05:01:59,960 I MEAN, WE'VE HEARD A LOT OF 6638 05:01:59,960 --> 05:02:01,395 SCHOOLS TALKING ABOUT WHAT DO 6639 05:02:01,395 --> 05:02:02,930 THEY ACTUALLY DO, BUT PEOPLE GET 6640 05:02:02,930 --> 05:02:05,866 VERY CAUGHT UP IN WHO IS 6641 05:02:05,866 --> 05:02:06,434 DIAGNOSING AUTISM. 6642 05:02:06,434 --> 05:02:10,571 IT IS A TICKET IN THE U.S. TO 6643 05:02:10,571 --> 05:02:12,540 INSURANCE, BUT IT NOT A TICKET 6644 05:02:12,540 --> 05:02:14,208 TO A PARTICULAR TREATMENT 6645 05:02:14,208 --> 05:02:15,876 BECAUSE THERE IS NO ONE 6646 05:02:15,876 --> 05:02:16,811 TREATMENT. 6647 05:02:16,811 --> 05:02:18,446 ANYWAY, LET ME STOP THERE AND 6648 05:02:18,446 --> 05:02:19,547 THANK YOU VERY MUCH FOR INVITING 6649 05:02:19,547 --> 05:02:20,214 ME. 6650 05:02:20,214 --> 05:02:25,886 [APPLAUSE] 6651 05:02:25,886 --> 05:02:27,321 >> OUR NEXT PRESENTATION IS ALSO 6652 05:02:27,321 --> 05:02:28,422 A RECORDING. 6653 05:02:28,422 --> 05:02:33,094 OUR NEXT PRESENTER IS DR. ELISA 6654 05:02:33,094 --> 05:02:33,994 FAZZI, SOMEONE I CONSIDER NOT 6655 05:02:33,994 --> 05:02:34,995 ONLY A FRIEND AND A COLLEAGUE 6656 05:02:34,995 --> 05:02:36,063 BUT ALSO A MENTOR. 6657 05:02:36,063 --> 05:02:37,698 PROFESSOR OF CHILD 6658 05:02:37,698 --> 05:02:38,632 NEUROPSYCHIATRY AND DIRECTOR OF 6659 05:02:38,632 --> 05:02:40,234 THE CHILD AND ADOLESCENT 6660 05:02:40,234 --> 05:02:41,068 NEUROPSYCHIATRY UNIT AT THE 6661 05:02:41,068 --> 05:02:43,304 UNIVERSITY OF BRESCIA, CIVIL 6662 05:02:43,304 --> 05:02:46,540 HOSPITAL BRESCIA, ITALY AS WELL. 6663 05:02:46,540 --> 05:02:47,741 I WANT TO MAKE A COMMENT. 6664 05:02:47,741 --> 05:02:49,376 YOU'LL NOTICE HER TITLE. 6665 05:02:49,376 --> 05:02:50,845 SHE IS A CHILD NEUROPSYCH 6666 05:02:50,845 --> 05:02:52,480 TERRORIST, AND ITALY IS ACTUALLY 6667 05:02:52,480 --> 05:02:54,682 QUITE UNIQUE, BECAUSE IT'S ONE 6668 05:02:54,682 --> 05:02:56,050 OF THE FEW COUNTRIES IN THE 6669 05:02:56,050 --> 05:02:57,718 WORLD WHERE THEY DID NOT 6670 05:02:57,718 --> 05:02:59,253 SEPARATE NEUROLOGY FROM 6671 05:02:59,253 --> 05:03:00,488 PSYCHIATRY AT CHILDREN'S LEVEL 6672 05:03:00,488 --> 05:03:02,590 SO THEY'RE QUITE UNIQUE IN THE 6673 05:03:02,590 --> 05:03:03,724 IDEA THAT IF YOU WANT TO 6674 05:03:03,724 --> 05:03:04,725 UNDERSTAND DEVELOPMENT, YOU HAVE 6675 05:03:04,725 --> 05:03:05,593 TO UNDERSTAND THE STRUCTURE AND 6676 05:03:05,593 --> 05:03:06,260 THE FUNCTION. 6677 05:03:06,260 --> 05:03:07,761 SO I THINK SHE COMES WITH A 6678 05:03:07,761 --> 05:03:08,896 VERY, VERY INTERESTING 6679 05:03:08,896 --> 05:03:09,964 PERSPECTIVE WHICH SHE WILL SHARE 6680 05:03:09,964 --> 05:03:11,165 WITH US. 6681 05:03:11,165 --> 05:03:12,166 QUICK SHOUT OUT TO ALL MY 6682 05:03:12,166 --> 05:03:14,135 FRIENDS BACK IN BRESCIA. 6683 05:03:14,135 --> 05:03:21,976 THANK YOU. 6684 05:03:21,976 --> 05:03:25,045 >> THIS IS OUR CENTER IN ITALY, 6685 05:03:25,045 --> 05:03:26,714 LOCATED WITHIN THE CHILD 6686 05:03:26,714 --> 05:03:29,049 NEUROLOGY DEPARTMENT IN BRESCIA 6687 05:03:29,049 --> 05:03:29,817 HOSPITAL. 6688 05:03:29,817 --> 05:03:35,523 THERE AN INTERDISCIPLINARY TEA 6689 05:03:35,523 --> 05:03:39,326 TEAM -- PEDIATRIC NEUROLOGISTS, 6690 05:03:39,326 --> 05:03:40,427 PSYCHOLOGISTS, AND DEVELOPMENTAL 6691 05:03:40,427 --> 05:03:42,296 THERAPISTS ASSESSES EACH CHILD 6692 05:03:42,296 --> 05:03:45,933 WITH THE PROTOCOL BASED ON A 6693 05:03:45,933 --> 05:03:51,605 CAREFUL EVALUATION OF ASPECTS 6694 05:03:51,605 --> 05:03:56,544 USING TESTS APPROPRIATE FOR 6695 05:03:56,544 --> 05:03:57,811 FUNCTION, EVALUATION APPROACH MO 6696 05:03:57,811 --> 05:04:00,548 KEL IS INTERDISCIPLINARY, AND 6697 05:04:00,548 --> 05:04:05,186 ALLOWS TO DEFINE THE OPERATION 6698 05:04:05,186 --> 05:04:07,021 PROFILE OF EVERY CHILD WITH 6699 05:04:07,021 --> 05:04:08,522 VISUAL PROBLEMS EVEN ASSOCIATED 6700 05:04:08,522 --> 05:04:13,027 WITH THE COMPLEX 6701 05:04:13,027 --> 05:04:14,895 NEURODEVELOPMENTAL DISABILITY 6702 05:04:14,895 --> 05:04:17,431 IN -- AREAS OF DEVELOPMENT. 6703 05:04:17,431 --> 05:04:19,600 THE VISUAL FUNCTION CONSISTS OF 6704 05:04:19,600 --> 05:04:20,334 SEVERAL FUNCTIONS. 6705 05:04:20,334 --> 05:04:23,571 IT ALLOWS -- TO SEE WITH THEIR 6706 05:04:23,571 --> 05:04:27,474 EYE TO PERCEIVE AND EXPLORE WITH 6707 05:04:27,474 --> 05:04:30,644 THE PRIMARY VISUAL PATHWAY AND 6708 05:04:30,644 --> 05:04:33,914 OCULAR MOTOR GAZE AND THUS KNOW 6709 05:04:33,914 --> 05:04:36,217 OUR ENVIRONMENT, LOCATING AND 6710 05:04:36,217 --> 05:04:38,519 RECOGNIZING OBJECTS. 6711 05:04:38,519 --> 05:04:41,021 THESE COMPONENTS ARE LINKED TO 6712 05:04:41,021 --> 05:04:43,991 FUNCTION OF DIFFERENT STRUCTURES 6713 05:04:43,991 --> 05:04:51,732 OVER THE VISUAL PATHWAYS. 6714 05:04:51,732 --> 05:04:52,866 ACCORDING TO THIS MODEL, THIS IS 6715 05:04:52,866 --> 05:04:55,469 THE SPECTRUM OF VISUAL 6716 05:04:55,469 --> 05:05:01,575 IMPAIRMENT WHICH CONSIDERS OUR 6717 05:05:01,575 --> 05:05:03,377 EVALUATION IS COMPLETED BY A 6718 05:05:03,377 --> 05:05:05,212 NEUROLOGICAL EXAM, AND THEN 6719 05:05:05,212 --> 05:05:07,848 ASSESSMENT OF OTHER 6720 05:05:07,848 --> 05:05:10,150 NEURODEVELOPMENTAL SKILLS SUCH 6721 05:05:10,150 --> 05:05:12,319 AS NEUROMOTOR COGNITIVE 6722 05:05:12,319 --> 05:05:14,822 COMMUNICATIVE AND BEHAVIORAL 6723 05:05:14,822 --> 05:05:20,094 PERFORMANCES TO TEST -- 6724 05:05:20,094 --> 05:05:21,929 VALIDATED. 6725 05:05:21,929 --> 05:05:24,765 THIS IS AN EXAMPLE OF OUR 6726 05:05:24,765 --> 05:05:29,703 PROTOCOL. 6727 05:05:29,703 --> 05:05:32,006 WE PERFORM A COMBINATION OF 6728 05:05:32,006 --> 05:05:38,445 BEHAVIORAL VISUAL TESTS SUCH A 6729 05:05:38,445 --> 05:05:41,081 AS -- GENETIC NARROW 6730 05:05:41,081 --> 05:05:46,620 PHYSIOLOGICAL EXAMS COMPLETE OUR 6731 05:05:46,620 --> 05:05:49,590 PROTOCOL ACCORDING TO THE 6732 05:05:49,590 --> 05:05:55,429 CLINICAL NEEDS OF EVERY CHILD. 6733 05:05:55,429 --> 05:05:56,997 FOR A MORE DETAILED ACCOUNT OF 6734 05:05:56,997 --> 05:05:58,565 THE PROTOCOL, HERE ARE TWO 6735 05:05:58,565 --> 05:06:00,801 SLIDES THAT TELL THE STORY IF 6736 05:06:00,801 --> 05:06:05,239 YOU ARE INTERESTED TO GO DEEPLY 6737 05:06:05,239 --> 05:06:15,783 IN OUR -- THIS IS EVALUATION -- 6738 05:06:16,050 --> 05:06:21,021 STARTING FROM OUR CONCEPTUAL 6739 05:06:21,021 --> 05:06:25,159 MOTOR -- VISUAL IMPAIRMENT FROM 6740 05:06:25,159 --> 05:06:29,863 STUDIES WE DEVELOPED A YOUR 6741 05:06:29,863 --> 05:06:32,199 LOGICAL ASSESSMENT OF VISUAL 6742 05:06:32,199 --> 05:06:32,466 FUNCTION. 6743 05:06:32,466 --> 05:06:34,668 IT IS MADE UP OF THREE MAIN 6744 05:06:34,668 --> 05:06:35,903 SECTIONS. 6745 05:06:35,903 --> 05:06:37,938 OCULAR VISUAL COMPONENT, MOTOR 6746 05:06:37,938 --> 05:06:39,273 VISUAL COMPONENT AND BASIC 6747 05:06:39,273 --> 05:06:45,446 VISUAL FUNCTIONS, WHICH ALLOW TO 6748 05:06:45,446 --> 05:06:46,947 OBTAIN A DETAILED COMPLETE 6749 05:06:46,947 --> 05:06:48,248 ANALYSIS OF VISUAL FUNCTION. 6750 05:06:48,248 --> 05:06:51,952 IT COULD BE RELATED TO DIFFERENT 6751 05:06:51,952 --> 05:06:53,387 LABELS OF INVOLVEMENT OF THE 6752 05:06:53,387 --> 05:06:54,555 VISUAL PATHWAY. 6753 05:06:54,555 --> 05:06:58,892 THIS IS AN EXAMPLE, A PRETERM 6754 05:06:58,892 --> 05:07:07,735 LITTLE NEWBORN, YOU CAN SEE HE 6755 05:07:07,735 --> 05:07:14,441 CAN FIX, FOLLOW, HE IS VERY 6756 05:07:14,441 --> 05:07:18,579 ATTRACTED BY HUMAN FACE. 6757 05:07:18,579 --> 05:07:29,123 AND HE FIXES -- VERY INTERESTED. 6758 05:07:29,890 --> 05:07:32,760 THIS EVALUATION IS EASY TO 6759 05:07:32,760 --> 05:07:34,161 PERFORM, NOT DISTURBING THE 6760 05:07:34,161 --> 05:07:41,702 INFANT, YOU CAN SEE ALSO IS IS A 6761 05:07:41,702 --> 05:07:44,104 SACCADE OF ATTRACTION. 6762 05:07:44,104 --> 05:07:45,873 ACCORDING TO OUR STATISTICAL 6763 05:07:45,873 --> 05:07:48,742 ANALYSIS, WE DEMONSTRATED THAT 6764 05:07:48,742 --> 05:07:51,445 THIS PARTICULAR -- THESE 6765 05:07:51,445 --> 05:07:53,981 ITEMS -- THE POTENTIAL -- 6766 05:07:53,981 --> 05:07:56,150 DISCRIMINATES NEWBORN WITH AND 6767 05:07:56,150 --> 05:07:57,851 WITHOUT BRAIN LESION 6768 05:07:57,851 --> 05:08:05,025 DEMONSTRATED BY ULTRASOUND SCAN. 6769 05:08:05,025 --> 05:08:08,095 SO WE CONCLUDED THAT VISUAL 6770 05:08:08,095 --> 05:08:11,698 FUNCTION OF NEWBORNS IS 6771 05:08:11,698 --> 05:08:13,967 IMPORTANT, SENSITIVE -- 6772 05:08:13,967 --> 05:08:15,402 NEUROLOGICAL IMPAIRMENT PROVIDES 6773 05:08:15,402 --> 05:08:16,737 INFORMATION ON THE EARLY 6774 05:08:16,737 --> 05:08:18,405 FUNCTIONING OF THE VISUAL SYSTEM 6775 05:08:18,405 --> 05:08:24,044 IS ABLE TO DISCRIMINATE THE 6776 05:08:24,044 --> 05:08:27,481 MARKERS -- AND COULD INTEGRATE 6777 05:08:27,481 --> 05:08:29,416 OPT THAT WILL MO LOGIC AND 6778 05:08:29,416 --> 05:08:30,384 NEUROLOGIC EVALUATION OF 6779 05:08:30,384 --> 05:08:31,151 NEWBORNS. 6780 05:08:31,151 --> 05:08:33,120 OUR EVALUATION PROTOCOL ALSO 6781 05:08:33,120 --> 05:08:35,422 FACILITATED THE DEVELOPMENT OF 6782 05:08:35,422 --> 05:08:39,059 AN EARLY INTERVENTION BASED ON A 6783 05:08:39,059 --> 05:08:41,929 VISUAL TRAINING TO PROMOTE NOT 6784 05:08:41,929 --> 05:08:44,498 ONLY VISUAL FUNCTION AND -- BUT 6785 05:08:44,498 --> 05:08:46,500 ALSO ALL ASPECTS OF 6786 05:08:46,500 --> 05:08:46,934 NEURODEVELOPMENT. 6787 05:08:46,934 --> 05:08:50,404 THE EFFECTIVENESS OF THIS 6788 05:08:50,404 --> 05:08:53,474 EARLY -- IS PRESENTED IN THIS 6789 05:08:53,474 --> 05:09:02,249 STUDY. 6790 05:09:02,249 --> 05:09:03,784 EARLY VISUAL TRAINING AND 6791 05:09:03,784 --> 05:09:04,518 ENVIRONMENTAL ADAMTION ARE 6792 05:09:04,518 --> 05:09:08,121 ASSOCIATED WITH ENHANCED VISUAL 6793 05:09:08,121 --> 05:09:11,925 ACUITY AND SMOOTH PR SUIT -- 6794 05:09:11,925 --> 05:09:12,159 SKILLS. 6795 05:09:12,159 --> 05:09:16,663 OUR TRAINING PROGRAM AIMS TO 6796 05:09:16,663 --> 05:09:18,398 ADAPT MICRO AND MACRO 6797 05:09:18,398 --> 05:09:21,368 ENVIRONMENT USING LIGHTING, 6798 05:09:21,368 --> 05:09:23,670 OPTIMAL DISTANCE, MOTOR SENSORY 6799 05:09:23,670 --> 05:09:26,707 TARGET TO ANNOUNCE VISUAL 6800 05:09:26,707 --> 05:09:29,543 POTENTIAL, TO TRAIN OCULAR MOTOR 6801 05:09:29,543 --> 05:09:31,745 FUNCTION SUCH AS FIXATION, 6802 05:09:31,745 --> 05:09:34,281 SMOOTH PURSUIT AND SACCADES. 6803 05:09:34,281 --> 05:09:37,751 TO PROMOTE RESEARCH STRATEGY AND 6804 05:09:37,751 --> 05:09:40,954 ENVIRONMENTAL EXPLORATION. 6805 05:09:40,954 --> 05:09:42,556 SUPPORTING THE INTEGRATION OF 6806 05:09:42,556 --> 05:09:48,095 THE OTHER SENSORY CHANNELS SUCH 6807 05:09:48,095 --> 05:09:51,331 AS -- WITH GLOBAL AIM TO PROMOTE 6808 05:09:51,331 --> 05:09:57,337 OVERALL INFANT NEURODEVELOPMENT. 6809 05:09:57,337 --> 05:09:59,306 IN A COMMUNICATIVE CONTEXT. 6810 05:09:59,306 --> 05:10:01,074 THIS IS AN EXAMPLE OF A CASE 6811 05:10:01,074 --> 05:10:05,646 THAT WE FOLLOW WITH THE TRAINING 6812 05:10:05,646 --> 05:10:07,080 FOR SIX MONTHS, THREE TIMES A 6813 05:10:07,080 --> 05:10:08,815 WEEK. 6814 05:10:08,815 --> 05:10:12,653 THIS IS A -- ONE, PRETERM BABY 6815 05:10:12,653 --> 05:10:17,291 AT THREE MONTHS, ULTRASOUND 6816 05:10:17,291 --> 05:10:18,992 POSTERIOR -- YOU CAN SEE SEVERE 6817 05:10:18,992 --> 05:10:22,930 VISUAL DEFICIT. 6818 05:10:22,930 --> 05:10:25,499 -- POSITION, VISUAL ACUITY IS 6819 05:10:25,499 --> 05:10:27,100 NOT MEASURABLE. 6820 05:10:27,100 --> 05:10:31,238 HE IS NOT INTERESTED ALSO IN THE 6821 05:10:31,238 --> 05:10:34,541 BRIGHT LIGHT, PARTICULARLY THE 6822 05:10:34,541 --> 05:10:36,310 INTERESTING OBJECT, AND HE'S NOT 6823 05:10:36,310 --> 05:10:41,548 ABLE TO FIXATE. 6824 05:10:41,548 --> 05:10:44,251 THIS IS A LITTLE EXAMPLE OF OUR 6825 05:10:44,251 --> 05:10:44,818 TRAINING. 6826 05:10:44,818 --> 05:10:52,159 YOU SEE THAT YOU USE A CHESS 6827 05:10:52,159 --> 05:10:56,964 BOARD FOR IMPROVED VISUAL 6828 05:10:56,964 --> 05:11:00,033 ATTENTION TO IMPROVE YOUR VISUAL 6829 05:11:00,033 --> 05:11:00,233 FIELD. 6830 05:11:00,233 --> 05:11:01,868 YOU CAN USE MOTOR SENSORY TARGET 6831 05:11:01,868 --> 05:11:05,272 AND YOU CAN ALSO PRO POPES 6832 05:11:05,272 --> 05:11:09,543 OBJECT TO THE OTHER SIDE TO 6833 05:11:09,543 --> 05:11:10,510 FACILITATE THE -- OF THAT. 6834 05:11:10,510 --> 05:11:12,613 AND YOU CAN SEE ALSO IMPROVEMENT 6835 05:11:12,613 --> 05:11:20,587 OF FIXATION WITH THE UTILIZATION 6836 05:11:20,587 --> 05:11:23,423 OF UMA PHASE. 6837 05:11:23,423 --> 05:11:32,499 AND THIS IS -- THIS IS THE 6838 05:11:32,499 --> 05:11:34,167 CHILD, INFANT, 9 MONTHS AFTER 6839 05:11:34,167 --> 05:11:36,036 SIX MONTH OF TRAINING, YOU CAN 6840 05:11:36,036 --> 05:11:37,771 SEE A LOT OF FUNCTIONAL IMPROVE. 6841 05:11:37,771 --> 05:11:40,907 YOU CAN SEE HE'S MORE INTERESTED 6842 05:11:40,907 --> 05:11:45,746 AND IS ABLE ALSO TO GRASP THE 6843 05:11:45,746 --> 05:11:48,915 OBJECT. 6844 05:11:48,915 --> 05:11:57,324 AND HE'S VERY IMPROVED ALSO I 6845 05:11:57,324 --> 05:11:59,426 IN -- SO OUR MULTIDISCIPLINARY 6846 05:11:59,426 --> 05:12:02,729 APPROACH HAS LED TO -- VISUAL 6847 05:12:02,729 --> 05:12:04,364 ASSESSMENT THAT CAN BE EXTENDED 6848 05:12:04,364 --> 05:12:07,034 EVEN TO NEWBORNS FROM THE FIRST 6849 05:12:07,034 --> 05:12:09,036 SPACE OF LIFE. 6850 05:12:09,036 --> 05:12:14,141 -- TO DETECT -- THIS CAN SERVE 6851 05:12:14,141 --> 05:12:16,710 AS A MARKER NOT ONLY FOR VISUAL 6852 05:12:16,710 --> 05:12:20,213 DYSFUNCTION BUT ALSO FOR NEURAL 6853 05:12:20,213 --> 05:12:20,647 DEVELOPMENT ISSUES. 6854 05:12:20,647 --> 05:12:25,752 IT CAN BE USEFUL TO IMPLEMENT 6855 05:12:25,752 --> 05:12:27,854 AND INDIVIDUALIZE INTENSIVE 6856 05:12:27,854 --> 05:12:33,093 INTERVENTION AS EARLY AS 6857 05:12:33,093 --> 05:12:37,698 POSSIBLE. 6858 05:12:37,698 --> 05:12:40,967 -- AND FOR THE EMPOWERMENT OF 6859 05:12:40,967 --> 05:12:48,542 PARENT-CHILD INTERACTION. 6860 05:12:48,542 --> 05:12:53,146 I CONCLUDE THANKING ALL THE 6861 05:12:53,146 --> 05:12:56,416 COLLABORATORS AND TEAMS WHICH 6862 05:12:56,416 --> 05:12:57,918 ARE VERY SUPPORTIVE AND 6863 05:12:57,918 --> 05:12:59,119 INTERESTING IN THE FIELD OF 6864 05:12:59,119 --> 05:13:00,854 VISUAL IMPAIRMENT, AND I THANK 6865 05:13:00,854 --> 05:13:05,292 YOU FOR YOUR KIND ATTENTION. 6866 05:13:05,292 --> 05:13:09,329 [APPLAUSE] 6867 05:13:09,329 --> 05:13:11,932 >> NEXT WE HAVE KAREN HARPSTER, 6868 05:13:11,932 --> 05:13:12,966 ASSISTANT PROFESSOR OF 6869 05:13:12,966 --> 05:13:13,700 OCCUPATIONAL THERAPY AND 6870 05:13:13,700 --> 05:13:16,169 PHYSICAL THERAPY AT CINCINNATI 6871 05:13:16,169 --> 05:13:16,870 CHILDREN'S HOSPITAL, AND SHE'LL 6872 05:13:16,870 --> 05:13:18,438 BE SPEAKING ABOUT THE IMPACT OF 6873 05:13:18,438 --> 05:13:19,573 MULTIPLE DISABILITIES ON 6874 05:13:19,573 --> 05:13:20,340 INTERVENTIONS IN CHILDREN WITH 6875 05:13:20,340 --> 05:13:30,417 CVI. 6876 05:15:04,811 --> 05:15:06,646 >> JUST TO LET YOU GUYS KNOW 6877 05:15:06,646 --> 05:15:07,747 BECAUSE WE'RE RUNNING A LITTLE 6878 05:15:07,747 --> 05:15:09,216 BEHIND WE'RE GOING TO CUT OUR 6879 05:15:09,216 --> 05:15:10,483 DISCUSSION DOWN TO 10 MINUTES 6880 05:15:10,483 --> 05:15:12,118 AND THEN WE'LL SKIP OUR BREAK, 6881 05:15:12,118 --> 05:15:13,854 BUT IF YOU NEED TO GO TO THE 6882 05:15:13,854 --> 05:15:15,655 RESTROOM, YOU CAN DO THAT AS WE 6883 05:15:15,655 --> 05:15:26,032 START THE FOCUS GROUP. 6884 05:15:44,150 --> 05:15:48,221 >> SORRY FOR THE DELAY. 6885 05:15:48,221 --> 05:15:49,022 I'M KAREN HARPS TER. 6886 05:15:49,022 --> 05:15:50,323 I'M GOING TO TALK ABOUT THE 6887 05:15:50,323 --> 05:15:51,524 IMPACT OF MULTIPLE DISABILITIES 6888 05:15:51,524 --> 05:15:52,926 ON INTERVENTIONS IN CHILDREN 6889 05:15:52,926 --> 05:15:53,260 WITH CVI. 6890 05:15:53,260 --> 05:15:55,028 I'M A MIDDLE AGED WOMAN WITH A 6891 05:15:55,028 --> 05:15:56,162 BLACK JACKET AND BLACK SHIRT 6892 05:15:56,162 --> 05:15:58,298 WITH SPOTS. 6893 05:15:58,298 --> 05:15:59,599 CHILDREN WITH MULTIPLE 6894 05:15:59,599 --> 05:16:01,468 DISABILITIES OFTEN ENCOUNTER 6895 05:16:01,468 --> 05:16:02,535 DIFFICULTIES ACCESSING AND 6896 05:16:02,535 --> 05:16:03,637 PARTICIPATING IN EVERYDAY 6897 05:16:03,637 --> 05:16:05,972 ACTIVITIES SUCH AS SELF-CARE, 6898 05:16:05,972 --> 05:16:08,275 PLAY, SCHOOL ACTIVITIES, SPORTS, 6899 05:16:08,275 --> 05:16:09,676 OTHER LEISURE ACTIVITIES, AND 6900 05:16:09,676 --> 05:16:11,111 THESE ARE THINGS THAT 6901 05:16:11,111 --> 05:16:12,946 OCCUPATIONAL THERAPISTS CALL 6902 05:16:12,946 --> 05:16:14,047 OCCUPATIONS. 6903 05:16:14,047 --> 05:16:15,148 CHILDREN WITH MULTIPLE 6904 05:16:15,148 --> 05:16:17,117 DISABILITIES ARE AT HIGHER RISK 6905 05:16:17,117 --> 05:16:18,952 FOR FUNCTIONAL VISION IMPAIRMENT 6906 05:16:18,952 --> 05:16:20,754 SUCH AS CVI, AND AS WE KNOW, IF 6907 05:16:20,754 --> 05:16:23,657 YOU HAVE A FUNCTIONAL VISION 6908 05:16:23,657 --> 05:16:24,457 IMPAIRMENT, IT IS GOING TO 6909 05:16:24,457 --> 05:16:25,492 AFFECT ALL ASPECTS OF YOUR 6910 05:16:25,492 --> 05:16:28,161 LEARNING AND DEVELOPMENT. 6911 05:16:28,161 --> 05:16:29,896 THEREFORE, THE EARLIER WE CAN 6912 05:16:29,896 --> 05:16:32,098 FIGURE OUT THAT THE CHILD HAS A 6913 05:16:32,098 --> 05:16:33,767 FUNCTIONAL VISION IMPAIRMENT, 6914 05:16:33,767 --> 05:16:34,868 THE BETTER OUTCOME. 6915 05:16:34,868 --> 05:16:43,510 SO THIS IS AN EXAMPLE -- THIS IS 6916 05:16:43,510 --> 05:16:45,078 A GIRL WITH CP AND CVI. 6917 05:16:45,078 --> 05:16:46,746 SHE WAS REFERRED TO OCCUPATION 6918 05:16:46,746 --> 05:16:47,747 MALL THERAPY BECAUSE SHE WASN'T 6919 05:16:47,747 --> 05:16:49,582 REACHING FOR A TOY LIKE HER MOM 6920 05:16:49,582 --> 05:16:50,150 THOUGHT SHE SHOULD. 6921 05:16:50,150 --> 05:16:52,986 WITH THE DIAGNOSIS OF CVI, HER 6922 05:16:52,986 --> 05:16:54,054 THERAPIST KNEW TO ADAPT THE 6923 05:16:54,054 --> 05:16:55,588 ENVIRONMENT IN A WAY TO SUPPORT 6924 05:16:55,588 --> 05:16:57,757 HER TO BE ABLE TO REACH FOR THE 6925 05:16:57,757 --> 05:16:58,892 TOYS AND WITHIN A SESSION, SHE 6926 05:16:58,892 --> 05:17:00,226 WAS REACHING FOR THE TOY. 6927 05:17:00,226 --> 05:17:02,595 SO IT JUST GOES TO SHOW US HOW 6928 05:17:02,595 --> 05:17:03,697 IMPORTANT UNDERSTANDING THAT A 6929 05:17:03,697 --> 05:17:05,999 CHILD HAS A CVI DIAGNOSIS OR A 6930 05:17:05,999 --> 05:17:07,667 FUNCTIONAL VISION IMPAIRMENT HOW 6931 05:17:07,667 --> 05:17:08,935 WE NEED TO ADAPT THE ENVIRONMENT 6932 05:17:08,935 --> 05:17:11,938 TO SUPPORT THE CHILD'S VISION. 6933 05:17:11,938 --> 05:17:13,974 THE GOALS OF AN OCCUPATIONAL 6934 05:17:13,974 --> 05:17:15,275 THERAPIST ARE FIRST TO MAXIMIZE 6935 05:17:15,275 --> 05:17:16,042 INDEPENDENCE OF THE FUNCTIONAL 6936 05:17:16,042 --> 05:17:17,610 SKILLS FOR A CHILD WITH MULTIPLE 6937 05:17:17,610 --> 05:17:19,179 DISABILITY. 6938 05:17:19,179 --> 05:17:21,081 INCREASE PARTICIPATION IN DAILY 6939 05:17:21,081 --> 05:17:21,781 ACTIVITY THAT ARE IMPORTANT TO 6940 05:17:21,781 --> 05:17:23,917 THE CHILD AND THE FAMILY. 6941 05:17:23,917 --> 05:17:25,185 WHILE MAKING SURE THEY HAVE 6942 05:17:25,185 --> 05:17:27,220 ACCESS TO THE ENVIRONMENTS, BOTH 6943 05:17:27,220 --> 05:17:28,855 VISUALLY AN COGNITIVELY. 6944 05:17:28,855 --> 05:17:32,659 BEING ABLE TO PURSUE MEANINGFUL 6945 05:17:32,659 --> 05:17:34,194 OCCUPATIONS ENHANCES A CHILD'S 6946 05:17:34,194 --> 05:17:35,428 PHYSICAL, MENTAL AND EMOTIONAL 6947 05:17:35,428 --> 05:17:36,663 WELL-BEING. 6948 05:17:36,663 --> 05:17:38,498 THIS IS A FRAMEWORK THAT OTs 6949 05:17:38,498 --> 05:17:40,233 USE WITH CHILDREN WITH MULTIPLE 6950 05:17:40,233 --> 05:17:41,735 DISABILITIES BOTH WITH AND 6951 05:17:41,735 --> 05:17:42,402 WITHOUT CVI. 6952 05:17:42,402 --> 05:17:45,839 IT'S CALLED A PERSON ENVIRONMENT 6953 05:17:45,839 --> 05:17:47,340 OCCUPATION OR PEO MODEL. 6954 05:17:47,340 --> 05:17:49,609 THIS MODEL FOCUSES ON THE 6955 05:17:49,609 --> 05:17:50,977 INTERACTION BETWEEN THE PERSON, 6956 05:17:50,977 --> 05:17:51,845 THE ENVIRONMENT AND 6957 05:17:51,845 --> 05:17:53,146 PARTICIPATION IN ACTIVITIES THAT 6958 05:17:53,146 --> 05:17:54,547 ARE VALUED TO THE CHILD AND TO 6959 05:17:54,547 --> 05:17:56,783 FAMILY. 6960 05:17:56,783 --> 05:17:57,951 WHEN WE'RE THINKING ABOUT THE 6961 05:17:57,951 --> 05:18:00,720 PERSON, THE OT UTILIZES A 6962 05:18:00,720 --> 05:18:02,188 HOLISTIC APPROACH CONSIDERING 6963 05:18:02,188 --> 05:18:04,824 BOTH THE PHYSICAL, COGNITIVE, 6964 05:18:04,824 --> 05:18:06,326 EMOTIONAL AND SOCIAL ASPECTS OF 6965 05:18:06,326 --> 05:18:08,061 THE CHILD'S DEVELOPMENT. 6966 05:18:08,061 --> 05:18:11,231 THIS COMPREHENSIVE PERSPECTIVE 6967 05:18:11,231 --> 05:18:12,599 IS ESSENTIAL ESPECIALLY DEALING 6968 05:18:12,599 --> 05:18:13,833 WITH CHILDREN WHO HAVE COMPLEX 6969 05:18:13,833 --> 05:18:14,701 NEEDS. 6970 05:18:14,701 --> 05:18:16,002 ADDITIONALLY WE CONSIDER THE 6971 05:18:16,002 --> 05:18:17,570 CHILD'S CHRONOLOGICAL DEVELOP 6972 05:18:17,570 --> 05:18:21,474 MEDEVELOPMENTAL AGE, AND OTs GET 6973 05:18:21,474 --> 05:18:22,709 TO KNOW THE CHILD AND THE FAMILY 6974 05:18:22,709 --> 05:18:23,777 TO UNDERSTAND WHAT THEIR GOALS 6975 05:18:23,777 --> 05:18:25,078 ARE AND WHAT OCCUPATIONS IT IS 6976 05:18:25,078 --> 05:18:26,780 THAT THEY WANT TO IMPROVE. 6977 05:18:26,780 --> 05:18:27,947 THE ENVIRONMENT INCLUDES BOTH 6978 05:18:27,947 --> 05:18:29,582 THE EXTERNAL FACTORS THAT 6979 05:18:29,582 --> 05:18:31,618 INFLUENCE A CHILD'S ABILITY TO 6980 05:18:31,618 --> 05:18:32,552 COMPLETE THEIR VALUED 6981 05:18:32,552 --> 05:18:33,686 ACTIVITIES. 6982 05:18:33,686 --> 05:18:34,921 IT'S IMPORTANT TO ANALYZE HOW 6983 05:18:34,921 --> 05:18:36,556 THE CHILD'S ABILITIES AND 6984 05:18:36,556 --> 05:18:37,490 LIMITATIONS AFFECT THE 6985 05:18:37,490 --> 05:18:38,425 INTERACTIONS WITH THE 6986 05:18:38,425 --> 05:18:40,393 ENVIRONMENT AND WHETHER THEY 6987 05:18:40,393 --> 05:18:42,362 FACILITATE OR HINDER ENGAGEMENT 6988 05:18:42,362 --> 05:18:43,263 IN THE ACTIVITY. 6989 05:18:43,263 --> 05:18:44,798 WE SHOULD THINK ABOUT ALL THE 6990 05:18:44,798 --> 05:18:45,732 ENVIRONMENTS THAT THE CHILD WILL 6991 05:18:45,732 --> 05:18:47,934 NEED TO PARTICIPATE IN THEIR 6992 05:18:47,934 --> 05:18:48,701 VALUED ACTIVITY. 6993 05:18:48,701 --> 05:18:50,370 WE WANT TO MAKE SURE THAT THEY 6994 05:18:50,370 --> 05:18:51,671 CAN GENERALIZE THE SKILL INTO 6995 05:18:51,671 --> 05:18:52,338 ALL ENVIRONMENTS THEY'RE GOING 6996 05:18:52,338 --> 05:18:53,406 TO BE IN. 6997 05:18:53,406 --> 05:18:54,841 FOR EXAMPLE, IF A CHILD HAS A 6998 05:18:54,841 --> 05:18:56,576 GOAL TO SOCIALIZE WITH THEIR 6999 05:18:56,576 --> 05:18:58,244 FRIENDS, WE NEED TO CONSIDER ALL 7000 05:18:58,244 --> 05:18:59,145 THE ENVIRONMENTS IN WHICH THIS 7001 05:18:59,145 --> 05:19:01,181 WOULD HAPPEN. 7002 05:19:01,181 --> 05:19:02,515 IN ADDITION TO THINKING ABOUT 7003 05:19:02,515 --> 05:19:03,817 THE LOCATION OF THE ENVIRONMENT, 7004 05:19:03,817 --> 05:19:05,318 WE ALSO WANT TO THINK ABOUT THE 7005 05:19:05,318 --> 05:19:06,553 COMPONENTS OF THE ENVIRONMENT, 7006 05:19:06,553 --> 05:19:08,221 AND HOW THEY SUPPORT OR 7007 05:19:08,221 --> 05:19:09,222 INTERFERE WITH COMPLETING THE 7008 05:19:09,222 --> 05:19:10,924 ACTIVITY. 7009 05:19:10,924 --> 05:19:12,025 THE COMPONENTS MIGHT INCLUDE 7010 05:19:12,025 --> 05:19:13,226 THINGS LIKE THE LIGHTING, THE 7011 05:19:13,226 --> 05:19:15,095 NUMBER OF CHILDREN PRESENT, THE 7012 05:19:15,095 --> 05:19:16,830 COMPLEXITY OR NOVELTY OF THE 7013 05:19:16,830 --> 05:19:17,330 ENVIRONMENT. 7014 05:19:17,330 --> 05:19:19,666 IT MIGHT ALSO BE THAT -- IT 7015 05:19:19,666 --> 05:19:20,834 MIGHT ALSO BE POSSIBLE THAT A 7016 05:19:20,834 --> 05:19:23,069 CHILD HAS NO DIFFICULTY 7017 05:19:23,069 --> 05:19:24,270 SOCIALIZING WITH A FRIEND AT HER 7018 05:19:24,270 --> 05:19:26,106 HOUSE BUT THEN HAS DIFFICULTY 7019 05:19:26,106 --> 05:19:27,107 SOCIALIZING WITH THAT SAME 7020 05:19:27,107 --> 05:19:28,942 FRIEND IN SCHOOL, IN A BUSY 7021 05:19:28,942 --> 05:19:29,409 LUNCHROOM. 7022 05:19:29,409 --> 05:19:30,910 THE FACTORS THAT MIGHT INFLUENCE 7023 05:19:30,910 --> 05:19:32,045 HER ABILITY TO SOCIALIZE IN 7024 05:19:32,045 --> 05:19:33,346 SCHOOL COULD BE THE NOISE LEVEL 7025 05:19:33,346 --> 05:19:34,681 AND BUSYNESS OF THE LUNCHROOM. 7026 05:19:34,681 --> 05:19:36,216 AS A TEAM, THE CHILD, THE FAMILY 7027 05:19:36,216 --> 05:19:37,917 AND ALL THE PEOPLE INVOLVED -- 7028 05:19:37,917 --> 05:19:39,285 ALL THE PROFESSIONALS INVOLVED 7029 05:19:39,285 --> 05:19:41,654 WITH THE CHILD NEED TO IDENTIFY 7030 05:19:41,654 --> 05:19:42,322 MODIFICATIONS IN THE ENVIRONMENT 7031 05:19:42,322 --> 05:19:44,290 OR THE ACTIVITY TO PROMOTE 7032 05:19:44,290 --> 05:19:46,126 SUCCESS. 7033 05:19:46,126 --> 05:19:47,327 OTs DISCUSS WITH THE CHILD AND 7034 05:19:47,327 --> 05:19:48,862 THE FAMILY THEIR PRIORITIES AND 7035 05:19:48,862 --> 05:19:49,863 WHAT OCCUPATIONS THEY WANT TO 7036 05:19:49,863 --> 05:19:51,364 WORK ON IN TREATMENT. 7037 05:19:51,364 --> 05:19:52,699 THE TREATMENT PLAN IS BASED ON 7038 05:19:52,699 --> 05:19:55,301 THESE VALUED ACTIVITIES AND IS 7039 05:19:55,301 --> 05:19:56,269 DEVELOPED IN PARTNERSHIP WITH 7040 05:19:56,269 --> 05:19:58,505 THE CHILD AND THE FAMILY. 7041 05:19:58,505 --> 05:20:01,141 ALSO UTILIZING MULTIDISCIPLINARY 7042 05:20:01,141 --> 05:20:03,643 COLLABORATIVE APPROACH IS KEY. 7043 05:20:03,643 --> 05:20:04,310 OTs PARTNER WITH THE 7044 05:20:04,310 --> 05:20:05,411 INDIVIDUALS WHO WORK WITH THE 7045 05:20:05,411 --> 05:20:07,480 CHILD ON THE IDENTIFIED GOALS. 7046 05:20:07,480 --> 05:20:09,582 FOR EXAMPLE, IF THE GOAL WAS TO 7047 05:20:09,582 --> 05:20:11,317 IMPROVE THE CHILD'S PERFORMANCE, 7048 05:20:11,317 --> 05:20:13,920 THE OT WOULD PARTNER WITH THE 7049 05:20:13,920 --> 05:20:16,756 CHILD'S TEACHER, AND THE 7050 05:20:16,756 --> 05:20:17,891 PARAPROFESSIONALS, TO DEVELOP A 7051 05:20:17,891 --> 05:20:21,060 PLAN TO ACHIEVE THE GOAL. 7052 05:20:21,060 --> 05:20:22,028 INTERVENTIONS SHOULD BE TAILORED 7053 05:20:22,028 --> 05:20:24,764 TO THE SPECIFIC ABILITIES OF THE 7054 05:20:24,764 --> 05:20:25,298 CHILD. 7055 05:20:25,298 --> 05:20:26,533 A PERSONALIZED APPROACH IS 7056 05:20:26,533 --> 05:20:27,934 IMPORTANT TO CHILDREN WITH 7057 05:20:27,934 --> 05:20:29,602 MULTIPLE DISABILITIES AS IT 7058 05:20:29,602 --> 05:20:32,438 ALLOWS FOR FLEXIBILITY AND 7059 05:20:32,438 --> 05:20:33,206 ADAPTABILITY OF THE TREATMENT 7060 05:20:33,206 --> 05:20:33,773 PLAN. 7061 05:20:33,773 --> 05:20:35,275 THE INTERVENTION PLAN IS 7062 05:20:35,275 --> 05:20:36,309 TAILORED AROUND THE CHILD'S 7063 05:20:36,309 --> 05:20:39,979 GOALS USING A STRENGTH-BASED 7064 05:20:39,979 --> 05:20:40,980 APROA. I KNOW WE'VE HEARD THAT 7065 05:20:40,980 --> 05:20:42,815 ALREADY TODAY, FOCUSING ON THE 7066 05:20:42,815 --> 05:20:43,716 CHILD'S STRENGTH IN ORDER TO 7067 05:20:43,716 --> 05:20:45,685 ENHANCE THEIR PERFORMANCE IN AN 7068 05:20:45,685 --> 05:20:46,152 ACTIVITY. 7069 05:20:46,152 --> 05:20:49,455 THEN WE FOCUS ON A TASK ANALYSIS 7070 05:20:49,455 --> 05:20:50,323 TO BREAK DOWN THE COMPONENTS OF 7071 05:20:50,323 --> 05:20:52,158 THE ACTIVITY AND IDENTIFY THE 7072 05:20:52,158 --> 05:20:53,226 CHILD'S STRENGTH AND HOW THEY 7073 05:20:53,226 --> 05:20:55,628 CAN BE USED TO ACHIEVE A GOAL. 7074 05:20:55,628 --> 05:20:57,197 AND THEN WHAT ARE THEIR DEFICITS 7075 05:20:57,197 --> 05:20:59,132 THAT WE SHOULD WORK ON IN 7076 05:20:59,132 --> 05:21:00,567 THERAPY? 7077 05:21:00,567 --> 05:21:02,435 MEASURING INTERVENTION 7078 05:21:02,435 --> 05:21:03,836 SUCCESS -- WE SHOULD INCLUDE A 7079 05:21:03,836 --> 05:21:04,904 FUNCTIONAL OUTCOME MEASURE. 7080 05:21:04,904 --> 05:21:06,472 THERE ARE A COUPLE EXAMPLES 7081 05:21:06,472 --> 05:21:10,944 HERE, FOR EXAMPLE, THE CANADIAN 7082 05:21:10,944 --> 05:21:14,247 OCCUPATIONAL PERFORMANCE 7083 05:21:14,247 --> 05:21:16,516 MEASURE, IMPLEMENTING 7084 05:21:16,516 --> 05:21:17,183 EVIDENCE-BASED INTERVENTION 7085 05:21:17,183 --> 05:21:18,184 SHOULD BE OUR PRIORITY. 7086 05:21:18,184 --> 05:21:19,586 HOWEVER, WE ALL KNOW THAT FOR 7087 05:21:19,586 --> 05:21:20,553 CHILDREN WITH CVI, THERE ARE 7088 05:21:20,553 --> 05:21:22,989 ONLY A FEW RANDOMIZED CONTROL 7089 05:21:22,989 --> 05:21:25,191 TRIALS AND SEVERAL LOWER LEVEL 7090 05:21:25,191 --> 05:21:28,661 STUDIES TO GUIDE INTERVENTION. 7091 05:21:28,661 --> 05:21:36,002 THEREFORE WE UTILIZE IN THOSE 7092 05:21:36,002 --> 05:21:36,903 THAT -- I'LL TALK ABOUT SOME OF 7093 05:21:36,903 --> 05:21:38,171 THE APPROACHES WE CAN USE IN 7094 05:21:38,171 --> 05:21:39,973 MORE DETAIL. 7095 05:21:39,973 --> 05:21:41,474 THE FIRST BEING ADAPTATIONS TO 7096 05:21:41,474 --> 05:21:43,343 THE CHILD'S ENVIRONMENT OR THEIR 7097 05:21:43,343 --> 05:21:44,877 ACTIVITY. 7098 05:21:44,877 --> 05:21:46,279 SPECIFICALLY FOR CHILDREN WITH 7099 05:21:46,279 --> 05:21:49,582 CVI, WE MAKE ENVIRONMENTAL AND 7100 05:21:49,582 --> 05:21:50,550 ACTIVITY ADAPTATIONS TO SUPPORT 7101 05:21:50,550 --> 05:21:52,185 THE CHILD'S VISION. 7102 05:21:52,185 --> 05:21:53,486 ACTIVITY ANALYSIS CAN BE USED TO 7103 05:21:53,486 --> 05:21:55,288 ADAPT THE ACTIVITY TO MATCH THE 7104 05:21:55,288 --> 05:21:56,589 CHILD'S VISUAL, MOTOR AND 7105 05:21:56,589 --> 05:21:59,392 COGNITIVE NEEDS. 7106 05:21:59,392 --> 05:22:01,694 WE THEN GRADE THE ACTIVITY TO 7107 05:22:01,694 --> 05:22:03,229 WORK TOWARDS INDEPENDENCE IN 7108 05:22:03,229 --> 05:22:04,030 SMALL STEPS. 7109 05:22:04,030 --> 05:22:05,632 AS CHILDREN PROGRESS, WE 7110 05:22:05,632 --> 05:22:07,400 EVALUATE PROGRESS, REA ASSESS 7111 05:22:07,400 --> 05:22:09,569 THEIR GOALS, REVISE THE 7112 05:22:09,569 --> 05:22:11,237 TREATMENT PLAN, INTERVENE AND 7113 05:22:11,237 --> 05:22:14,173 RE-EVALUATE, USUALLY A 7114 05:22:14,173 --> 05:22:18,111 CONTINUOUS LOOP. 7115 05:22:18,111 --> 05:22:20,079 EDUCATION MIGHT INCLUDE THINGS 7116 05:22:20,079 --> 05:22:22,215 LIKE BEHAVIORAL CHARACTERISTICS 7117 05:22:22,215 --> 05:22:24,117 OF CVI, HOW TO ENHANCE VISUAL 7118 05:22:24,117 --> 05:22:25,184 ATTENTION DURING FUNCTIONAL 7119 05:22:25,184 --> 05:22:25,451 ACTIVITY. 7120 05:22:25,451 --> 05:22:26,519 THIS MIGHT INVOLVE MAKING SURE 7121 05:22:26,519 --> 05:22:27,954 THE CHILD'S CAREGIVER 7122 05:22:27,954 --> 05:22:30,023 UNDERSTANDS HOW TO MATCH THE 7123 05:22:30,023 --> 05:22:31,124 ACTIVITY DEMANDS TO THE CHILD'S 7124 05:22:31,124 --> 05:22:33,660 FUNCTIONAL VISION, AND ACTIVITY 7125 05:22:33,660 --> 05:22:34,694 ENVIRONMENTAL MODIFICATIONS AND 7126 05:22:34,694 --> 05:22:35,828 HOW THEY MIGHT VARY THROUGHOUT 7127 05:22:35,828 --> 05:22:36,296 THE DAY. 7128 05:22:36,296 --> 05:22:37,363 WE'VE ALREADY HEARD A LOT ABOUT 7129 05:22:37,363 --> 05:22:38,464 FATIGUE AND HOW THAT'S GOING TO 7130 05:22:38,464 --> 05:22:42,035 AFFECT THE CHILD'S ABILITY TO 7131 05:22:42,035 --> 05:22:43,403 CARRY OUT THE ACTIVITY. 7132 05:22:43,403 --> 05:22:46,039 AND ADAPTATIONS THAT MIGHT 7133 05:22:46,039 --> 05:22:47,540 CHANGE DEPENDING ON THE 7134 05:22:47,540 --> 05:22:48,741 ENVIRONMENT, SO SENSORY 7135 05:22:48,741 --> 05:22:49,809 ENVIRONMENT MIGHT BE DIFFERENT, 7136 05:22:49,809 --> 05:22:50,843 IT MIGHT BE A NEW ENVIRONMENT, 7137 05:22:50,843 --> 05:22:52,812 THERE COULD BE HIGH LEVELS OF 7138 05:22:52,812 --> 05:22:53,813 DISTRACTION, SO WE NEED TO THINK 7139 05:22:53,813 --> 05:22:55,581 ABOUT THOSE THINGS AND EDUCATE 7140 05:22:55,581 --> 05:22:57,950 EVERYBODY ON THE CHILD'S TEAM. 7141 05:22:57,950 --> 05:23:00,320 USING EQUIPMENT AND TECHNOLOGY 7142 05:23:00,320 --> 05:23:01,721 CAN ENHANCE FUNCTIONAL 7143 05:23:01,721 --> 05:23:02,388 PERFORMANCE. 7144 05:23:02,388 --> 05:23:03,956 THERE ARE VARIETY OF POSITIONERS 7145 05:23:03,956 --> 05:23:06,092 AND SEATING AT THE VICES TO 7146 05:23:06,092 --> 05:23:06,959 SUPPORT PROPER SEATING FOR THE 7147 05:23:06,959 --> 05:23:08,294 CHILD WITH MULTIPLE DISABILITIES 7148 05:23:08,294 --> 05:23:09,362 AND CVI. 7149 05:23:09,362 --> 05:23:10,596 ADDITIONALLY, WE CAN USE 7150 05:23:10,596 --> 05:23:12,432 ASSISTIVE TECHNOLOGY TO SUPPORT 7151 05:23:12,432 --> 05:23:13,966 FUNCTIONAL PERFORMANCE. 7152 05:23:13,966 --> 05:23:15,401 SOME TECHNOLOGY IS LOW TECH THAT 7153 05:23:15,401 --> 05:23:17,603 MIGHT JUST BE AN ADAPTIVE 7154 05:23:17,603 --> 05:23:18,338 UTENSIL OR SOMETHING HIGH-TECH 7155 05:23:18,338 --> 05:23:20,473 LIKE A COMMUNICATION DEVICE. 7156 05:23:20,473 --> 05:23:21,140 >> WE HAVE ONE MINUTE. 7157 05:23:21,140 --> 05:23:22,275 >> OKAY. 7158 05:23:22,275 --> 05:23:24,610 OTs USE TASK ANALYSIS AND 7159 05:23:24,610 --> 05:23:25,578 TASK-SPECIFIC TRAINING TO 7160 05:23:25,578 --> 05:23:26,846 PROMOTE MOTOR SKILLS AND VISUAL 7161 05:23:26,846 --> 05:23:29,415 SKILLS, LEADING TO IMPROVEMENT 7162 05:23:29,415 --> 05:23:30,583 IN MEANINGFUL OCCUPATION. 7163 05:23:30,583 --> 05:23:32,318 SETTING UP THE ENVIRONMENT TO 7164 05:23:32,318 --> 05:23:34,020 PROMOTE SELF-INITIATED ACTIVE 7165 05:23:34,020 --> 05:23:35,188 MOVEMENTS IS A GREAT WAY TO 7166 05:23:35,188 --> 05:23:36,055 PROMOTE MOTOR SKILLS. 7167 05:23:36,055 --> 05:23:37,390 RECENT EVIDENCE SHOWS THAT 7168 05:23:37,390 --> 05:23:38,491 ENRICHING THE ENVIRONMENT TO 7169 05:23:38,491 --> 05:23:39,892 PROMOTE ACTIVE MOVEMENTS LEADS 7170 05:23:39,892 --> 05:23:41,994 TO SELF-DISCOVERY FOR CHILDREN 7171 05:23:41,994 --> 05:23:44,330 AND ENHANCEMENT OF SKILLS. 7172 05:23:44,330 --> 05:23:46,299 OTs ENCOURAGE CAREGIVERS TO 7173 05:23:46,299 --> 05:23:47,467 INCORPORATE INTERVENTIONS INTO 7174 05:23:47,467 --> 05:23:49,102 THEIR DAILY ROUTINES TO MAKE 7175 05:23:49,102 --> 05:23:51,137 THEM MO MORE MANAGEABLE AND PROE 7176 05:23:51,137 --> 05:23:52,538 DAILY PRACTICE. 7177 05:23:52,538 --> 05:23:54,640 WE UTILIZE THESE INTERVENTION 7178 05:23:54,640 --> 05:23:55,641 PRINCIPLES TOGETHER WITH 7179 05:23:55,641 --> 05:23:56,909 CHILDREN WITH MULTIPLE 7180 05:23:56,909 --> 05:23:59,445 DISABILITIES AND CVI TO MAXIMIZE 7181 05:23:59,445 --> 05:24:00,246 THEIR FUNCTIONAL IND PENSION. 7182 05:24:00,246 --> 05:24:04,283 THANKS FOR -- FUNCTIONAL INDEP. 7183 05:24:04,283 --> 05:24:05,118 THANKS FOR YOUR TIE. 7184 05:24:05,118 --> 05:24:08,755 [APPLAUSE] 7185 05:24:08,755 --> 05:24:09,389 >> THANK YOU. 7186 05:24:09,389 --> 05:24:12,158 NEXT WE HAVE DR. RICHARD BOWMAN, 7187 05:24:12,158 --> 05:24:12,959 CONSULTANT AND ASSOCIATE 7188 05:24:12,959 --> 05:24:14,327 PROFESSOR IN DEPARTMENT OF 7189 05:24:14,327 --> 05:24:16,329 OPHTHALMOLOGY AT THE GREAT 7190 05:24:16,329 --> 05:24:17,497 ORMOND STREET HOSPITAL, HE'LL BE 7191 05:24:17,497 --> 05:24:18,965 SPEAKING ABOUT THE EUROPEAN 7192 05:24:18,965 --> 05:24:26,172 CONSORTIUM FOR CVI. 7193 05:24:26,172 --> 05:24:28,241 >> THANKS VERY MUCH, GOOD 7194 05:24:28,241 --> 05:24:28,808 AFTERNOON. 7195 05:24:28,808 --> 05:24:29,776 LAST PRESENTATION OF THE DAY, I 7196 05:24:29,776 --> 05:24:30,443 THINK. 7197 05:24:30,443 --> 05:24:33,312 MY APPEARANCE IS BRITISH, 7198 05:24:33,312 --> 05:24:35,181 NEITHER ME NOR MY FELLOW BRIT 7199 05:24:35,181 --> 05:24:36,916 JOHN ARE WEARING A TIE, I'M 7200 05:24:36,916 --> 05:24:38,551 AFRAID. 7201 05:24:38,551 --> 05:24:43,156 APOLOGIES FOR DRAGGING THE 7202 05:24:43,156 --> 05:24:45,191 SARTORIAL TONE DOWN ON BEHALF OF 7203 05:24:45,191 --> 05:24:46,459 THE BRITS. 7204 05:24:46,459 --> 05:24:48,528 I'M REPRESENTING THE EUROPEAN 7205 05:24:48,528 --> 05:24:49,095 CONSENSUS -- OH, YEAH. 7206 05:24:49,095 --> 05:24:53,332 SORRY. 7207 05:24:53,332 --> 05:24:55,968 I'LL TRY TO RESTRAIN MYSELF. 7208 05:24:55,968 --> 05:24:57,937 SO WE'RE TRYING TO DO THE SAME 7209 05:24:57,937 --> 05:24:59,605 SORT OF THING IN EUROPE. 7210 05:24:59,605 --> 05:25:02,341 AND THIS IS OUR GROUP LED BY 7211 05:25:02,341 --> 05:25:04,944 NAOMI DALE WHO'S A PSYCHOLOGIST 7212 05:25:04,944 --> 05:25:07,246 AND A NEUROLOGIST. 7213 05:25:07,246 --> 05:25:08,381 THAT IMMEDIATELY SUGGESTS A 7214 05:25:08,381 --> 05:25:09,348 SLIGHT DIFFERENCE IN THE 7215 05:25:09,348 --> 05:25:12,652 PROFESSIONAL BRE BREAKDOWN OF TE 7216 05:25:12,652 --> 05:25:15,588 PEOPLE HERE VERSUS IN EUROPE. 7217 05:25:15,588 --> 05:25:17,890 SO DEVELOPMENTAL PEDIATRICIANS, 7218 05:25:17,890 --> 05:25:19,192 PEDIATRIC NEUROLOGISTS AND 7219 05:25:19,192 --> 05:25:21,494 PSYCHOLOGISTS AS WELL AS 7220 05:25:21,494 --> 05:25:24,697 OPHTHALMOLOGISTS AND KORINA, 7221 05:25:24,697 --> 05:25:27,533 WHO'S OUR HONORARY EUROPEAN AND 7222 05:25:27,533 --> 05:25:28,401 HONORARY BRAIN SCIENTIST AS 7223 05:25:28,401 --> 05:25:31,571 WELL. 7224 05:25:31,571 --> 05:25:33,005 SO THE OVERALL BIG QUESTIONS ARE 7225 05:25:33,005 --> 05:25:34,841 THE SAME, WHAT'S THE CORE 7226 05:25:34,841 --> 05:25:35,508 FUNCTIONAL DEFICIT WITH CVI, 7227 05:25:35,508 --> 05:25:38,744 DOES THE REGION OF THE BRAIN 7228 05:25:38,744 --> 05:25:41,247 AFFECTED MAKE A DIFFERENCE. 7229 05:25:41,247 --> 05:25:44,016 AND WHAT ARE THE BEST ASSESSMENT 7230 05:25:44,016 --> 05:25:44,984 AND DIAGNOSTIC TOOLS? 7231 05:25:44,984 --> 05:25:48,254 JUST THIS AFTERNOON, WITHIN THIS 7232 05:25:48,254 --> 05:25:49,589 ROOM, WE'VE SEEN EIGHT DIFFERENT 7233 05:25:49,589 --> 05:25:50,890 PEOPLE PRESENT EIGHT DIFFERENT 7234 05:25:50,890 --> 05:25:52,091 DIAGNOSTIC TOOLS, ALL OF WHICH 7235 05:25:52,091 --> 05:25:52,758 LOOK GOOD. 7236 05:25:52,758 --> 05:25:55,394 BUT HOW DO WE DECIDE WHAT IS THE 7237 05:25:55,394 --> 05:25:56,729 BEST ONE TO MOVE FORWARD WITH. 7238 05:25:56,729 --> 05:26:07,206 CAN WE REACH A CONSENSUS ON IT? 7239 05:26:07,206 --> 05:26:13,012 WHICH STAWE STARTED WITH A DEFIF 7240 05:26:13,012 --> 05:26:14,680 CVI, WE PUBLISHED IT SIX YEARS 7241 05:26:14,680 --> 05:26:15,114 AGO. 7242 05:26:15,114 --> 05:26:17,416 IT DOESN'T REALLY SAY MUCH MORE 7243 05:26:17,416 --> 05:26:23,022 CVI, VEER RAL VI CEREBRAL IMPAI. 7244 05:26:23,022 --> 05:26:27,293 THE QUESTION IS HOW CAN WE DYING 7245 05:26:27,293 --> 05:26:29,595 KNOWS IT AND MATCH INTERVENTIONS 7246 05:26:29,595 --> 05:26:29,896 TO THEM. 7247 05:26:29,896 --> 05:26:31,531 SO WE'RE TRYING TO TAKE IT A BIT 7248 05:26:31,531 --> 05:26:34,634 FURTHER THAN WHAT THE DEFINITION 7249 05:26:34,634 --> 05:26:36,302 IS, AND THE STRUCTURE OF THE 7250 05:26:36,302 --> 05:26:37,370 EUROPEAN CONSENSUS GROUP IS A 7251 05:26:37,370 --> 05:26:38,804 GROUP OF EXPERTS, SO KIND OF 7252 05:26:38,804 --> 05:26:40,339 TALKING SHOP TO START WITH. 7253 05:26:40,339 --> 05:26:43,175 THEN TO TRY AND BASE IT ON 7254 05:26:43,175 --> 05:26:44,510 EVIDENCE, A SYSTEMATIC REVIEW, 7255 05:26:44,510 --> 05:26:47,046 WHICH WE GOT A BIT OF MONEY FOR. 7256 05:26:47,046 --> 05:26:48,114 KARINA HAS LED ON THAT AND WAS 7257 05:26:48,114 --> 05:26:49,415 GOING TO TALK ABOUT IT BUT WE'VE 7258 05:26:49,415 --> 05:26:50,850 RUN OUT OF TIME SO YOU CAN ASK 7259 05:26:50,850 --> 05:26:55,254 HER ABOUT THAT AFTERWARDS. 7260 05:26:55,254 --> 05:26:57,423 AND THEN WE'RE GOING TO CONSULT 7261 05:26:57,423 --> 05:26:59,191 PATIENT, FAMILIES AS WELL, SO 7262 05:26:59,191 --> 05:27:00,293 THOSE THREE DIMENSIONS WILL 7263 05:27:00,293 --> 05:27:01,827 HOPEFULLY LEAD US TO SOME 7264 05:27:01,827 --> 05:27:03,462 EVIDENCE-BASED GUIDELINES FOR 7265 05:27:03,462 --> 05:27:07,967 PRACTICE AROUND ASSESSMENT, IT 7266 05:27:07,967 --> 05:27:09,335 SAYS INTERVENTION BUT ASSESSMENT 7267 05:27:09,335 --> 05:27:11,904 AND DIAGNOSIS AT THIS STAGE. 7268 05:27:11,904 --> 05:27:13,039 INTERVENTION WILL COME LATER. 7269 05:27:13,039 --> 05:27:17,843 THE GENERAL PRINCIPLES BY WHICH 7270 05:27:17,843 --> 05:27:19,278 THE GROUPS REPRESENTED IN THE 7271 05:27:19,278 --> 05:27:21,013 EUROPEAN CONSENSUS GROUP OPERATE 7272 05:27:21,013 --> 05:27:22,882 BY IMPORTANCE ON 7273 05:27:22,882 --> 05:27:30,456 MULTIDISCIPLINARY APPROACH USING 7274 05:27:30,456 --> 05:27:32,625 SCIENTIFICALLY VALIDATED 7275 05:27:32,625 --> 05:27:34,627 STANDARD ASSESSMENTS, AND TAKING 7276 05:27:34,627 --> 05:27:36,028 INTO CONSIDERATION THE 7277 05:27:36,028 --> 05:27:36,762 DEVELOPMENTAL TRAJECTORY OF 7278 05:27:36,762 --> 05:27:38,864 CHILDREN SO THAT WE COME UP WITH 7279 05:27:38,864 --> 05:27:46,005 AN INDIVIDUALIZED COMPREHENSIVE 7280 05:27:46,005 --> 05:27:46,806 ASSESSMENT FOR EACH CHILD. 7281 05:27:46,806 --> 05:27:47,640 OF COURSE MANY OF YOU HAVE 7282 05:27:47,640 --> 05:27:49,108 TOUCHED ON THOSE DIMENSIONS IN 7283 05:27:49,108 --> 05:27:50,076 YOUR TALKS THIS AFTERNOON. 7284 05:27:50,076 --> 05:27:51,143 SO I'M JUST GOING TO GIVE YOU 7285 05:27:51,143 --> 05:27:52,378 SOME EXAMPLES OF SOME OF THE 7286 05:27:52,378 --> 05:27:53,613 QUESTIONS THAT WE CAME UP WITH 7287 05:27:53,613 --> 05:27:54,914 IN REGARDS TO SCREENING. 7288 05:27:54,914 --> 05:27:56,549 I MEAN, THE SCREENING QUESTIONS 7289 05:27:56,549 --> 05:27:58,084 ARE OBVIOUS, DO WE HAVE A TOOL 7290 05:27:58,084 --> 05:27:59,518 FOR SCREENING? 7291 05:27:59,518 --> 05:28:02,254 WHICH GROUPS SHOULD BE -- SHOULD 7292 05:28:02,254 --> 05:28:05,024 WE BE DOING TARGETED SCREENING 7293 05:28:05,024 --> 05:28:06,892 FOR PARTICULAR GROUPS OR SHOULD 7294 05:28:06,892 --> 05:28:08,427 ALL CHILDREN BE SCREENED IF 7295 05:28:08,427 --> 05:28:10,363 THERE'S ONE IN EVERY PRIMARY 7296 05:28:10,363 --> 05:28:11,397 SCHOOL CLASSROOM. 7297 05:28:11,397 --> 05:28:15,201 WE DID A STUDY YEARS AGO ON 8 TO 7298 05:28:15,201 --> 05:28:17,403 12-YEAR-OLDS, THEY'VE ALL GONE 7299 05:28:17,403 --> 05:28:18,704 THROUGH NEURODEVELOPMENTAL 7300 05:28:18,704 --> 05:28:20,106 SCREENING AND PASSED AS NORMAL, 7301 05:28:20,106 --> 05:28:22,742 AND THEY ALL HAD NORMAL ACUITY 7302 05:28:22,742 --> 05:28:24,944 AND NORMAL IQ, BUT A THIRD OF 7303 05:28:24,944 --> 05:28:27,913 THEM SCORED REALLY HIGHLY ON THE 7304 05:28:27,913 --> 05:28:29,248 QUESTIONNAIRES WE WERE TALKING 7305 05:28:29,248 --> 05:28:29,982 ABOUT EARLIER. 7306 05:28:29,982 --> 05:28:32,218 WHEN WE TESTED THEM WITH 7307 05:28:32,218 --> 05:28:34,387 PSYCHOPHYSICAL TESTS OF VISUAL 7308 05:28:34,387 --> 05:28:35,588 PERCEPTION, THEY DID BADLY ON 7309 05:28:35,588 --> 05:28:37,790 THOSE AS WELL, SO IT REALLY WAS 7310 05:28:37,790 --> 05:28:38,991 A VISUAL IMPAIRMENT THAT HAD 7311 05:28:38,991 --> 05:28:41,293 BEEN MISSED, THEY HAD NORMAL 7312 05:28:41,293 --> 05:28:42,395 ACUITY, THAT'S WHY JOHN SAID 7313 05:28:42,395 --> 05:28:44,897 EARLIER PROBABLY ONLY ONE IN 50 7314 05:28:44,897 --> 05:28:45,798 HAVE BEEN DIAGNOSED. 7315 05:28:45,798 --> 05:28:47,566 SO SCREENING IS AN IMPORTANT 7316 05:28:47,566 --> 05:28:50,202 TOPIC, AND NEURODEVELOPMENTAL 7317 05:28:50,202 --> 05:28:51,737 PEDIATRICIANS, THEY KNOW, THEY 7318 05:28:51,737 --> 05:28:53,906 FEEL GUILTY THAT VISION IS NOT 7319 05:28:53,906 --> 05:28:55,941 PAID ENOUGH ATTENTION TO IN THE 7320 05:28:55,941 --> 05:28:57,777 SCREENING THAT DOES EXIST. 7321 05:28:57,777 --> 05:28:58,978 DIAGNOSIS, WHAT ARE THE CORE 7322 05:28:58,978 --> 05:29:02,048 TESTS THAT WE SHOULD BE DOING. 7323 05:29:02,048 --> 05:29:03,015 AGAIN, WE'VE BEEN TOUCHING ON 7324 05:29:03,015 --> 05:29:05,251 THIS WITH ALL OUR PRESENTATIONS. 7325 05:29:05,251 --> 05:29:06,218 THE ONE AGAIN THING THAT 7326 05:29:06,218 --> 05:29:07,286 PROBABLY HASN'T BEEN MENTIONED 7327 05:29:07,286 --> 05:29:11,490 THIS AFTERNOON THAT WE PERHAPS 7328 05:29:11,490 --> 05:29:13,759 LOOK MORE AT IN EUROPE IS THESE 7329 05:29:13,759 --> 05:29:14,894 FORMAL NEUROPSYCHOLOGICAL TESTS, 7330 05:29:14,894 --> 05:29:15,995 THE VISUAL PERCEPTION, 7331 05:29:15,995 --> 05:29:17,396 PARTICULARLY IN CHILDREN WHO 7332 05:29:17,396 --> 05:29:18,664 HAVE GOOD VISUAL ACUITY WHO TEND 7333 05:29:18,664 --> 05:29:20,633 TO PASS ALL THE TESTS WE DEND TO 7334 05:29:20,633 --> 05:29:23,469 DTEND TODO IN THE EYE CLINIC. 7335 05:29:23,469 --> 05:29:25,237 AS I SAID, WE'VE DONE A COUPLE 7336 05:29:25,237 --> 05:29:30,876 OF STUDIES ON THAT QUESTIONN 7337 05:29:30,876 --> 05:29:31,210 QUESTIONNAIRE. 7338 05:29:31,210 --> 05:29:32,344 I WAS PLEASED TO SEE HE SHOWED 7339 05:29:32,344 --> 05:29:34,680 THE CORRELATION WITH THE VP 7340 05:29:34,680 --> 05:29:36,115 PARAMETERS, AND WE HAVE ALSO 7341 05:29:36,115 --> 05:29:37,717 SHOWN CORRELATION WITH 7342 05:29:37,717 --> 05:29:39,485 NEUROPSYCHOLOGICAL TESTS. 7343 05:29:39,485 --> 05:29:40,453 THAT IS SOME VALIDATION. 7344 05:29:40,453 --> 05:29:42,888 OF COURSE ELECTROPHYSIOLOGY AND 7345 05:29:42,888 --> 05:29:43,756 NEUROPSYCHOLOGICAL TESTS CAN BE 7346 05:29:43,756 --> 05:29:46,425 DIFFICULT TO ACCESS FOR OUR 7347 05:29:46,425 --> 05:29:48,594 CHILDREN, SO THE FACT THAT THAT 7348 05:29:48,594 --> 05:29:52,198 SIMPLE QUESTIONNAIRE CAME IN AND 7349 05:29:52,198 --> 05:29:53,099 CORRELATES WITH BOTH THOSE 7350 05:29:53,099 --> 05:29:55,401 THINGS IS USEFUL. 7351 05:29:55,401 --> 05:29:56,402 WHAT ABOUT CLASSIFICATION? 7352 05:29:56,402 --> 05:29:58,804 IS IT USEFUL TO CLASSIFY 7353 05:29:58,804 --> 05:30:00,539 CHILDREN INTO DIFFERENT TYPES OF 7354 05:30:00,539 --> 05:30:01,040 CVI? 7355 05:30:01,040 --> 05:30:02,508 WE'VE PROBABLY ALL COME ACROSS 7356 05:30:02,508 --> 05:30:05,111 THE CLASSIC DORSAL AND VENTRAL 7357 05:30:05,111 --> 05:30:06,412 STREAM CLASSIFICATION. 7358 05:30:06,412 --> 05:30:08,714 SHOULD WE BE TRYING TO COME UP 7359 05:30:08,714 --> 05:30:10,416 WITH SOMETHING LIKE THE GROSS 7360 05:30:10,416 --> 05:30:14,854 MOTOR FUNCTION SCALE FOR 7361 05:30:14,854 --> 05:30:15,588 CEREBRAL PALSY? 7362 05:30:15,588 --> 05:30:17,189 SHOULD WE NOT COME WITH 7363 05:30:17,189 --> 05:30:18,591 PRECONCEPTIONS BUT DO DATA 7364 05:30:18,591 --> 05:30:20,459 ANALYSIS AND DO CLUSTER ANALYSIS 7365 05:30:20,459 --> 05:30:22,895 AND SEE IF THERE REALLY ARE 7366 05:30:22,895 --> 05:30:23,763 DIFFERENT GROUPS THERE. 7367 05:30:23,763 --> 05:30:26,298 ONE OF OUR PH.D. STUDENTS TRIED 7368 05:30:26,298 --> 05:30:28,134 TO DO THAT, SO SHE HAD A GROUP 7369 05:30:28,134 --> 05:30:35,508 OF 40 OR SO ALL CAUSE CVI MILD 7370 05:30:35,508 --> 05:30:38,911 TO MODERATE AND ENTERED THOSE 7371 05:30:38,911 --> 05:30:39,545 DATA. 7372 05:30:39,545 --> 05:30:41,714 SO ACUITY, STEREO, CONTRAST, AND 7373 05:30:41,714 --> 05:30:44,817 TWO TESTS OF VISUAL PERCEPTION, 7374 05:30:44,817 --> 05:30:48,988 AND JUST LET THE DATA FALL INTO 7375 05:30:48,988 --> 05:30:51,290 CLUSTERS, AND SURE ENOUGH, THERE 7376 05:30:51,290 --> 05:30:53,225 DID SEEM TO BE TWO CLUSTERS, 7377 05:30:53,225 --> 05:30:54,960 BASICALLY MILD AND MODERATE, BUT 7378 05:30:54,960 --> 05:30:56,328 IF YOU THEN PLOT THEM, YOU SEE 7379 05:30:56,328 --> 05:30:57,830 THERE'S NO GAP BETWEEN THOSE 7380 05:30:57,830 --> 05:30:58,264 CLUSTERS. 7381 05:30:58,264 --> 05:30:59,932 SO ARE THEY SUBTYPES OR ARE WE 7382 05:30:59,932 --> 05:31:02,368 DEALING WITH A SPECTRUM OF 7383 05:31:02,368 --> 05:31:03,669 SEVERITY? 7384 05:31:03,669 --> 05:31:05,538 WHAT WAS INTERESTING TO ME IS 7385 05:31:05,538 --> 05:31:06,539 PROBABLY TOO SMALL TO SEE ON 7386 05:31:06,539 --> 05:31:07,773 THAT SLIDE, BUT THE DIFFERENCE 7387 05:31:07,773 --> 05:31:11,477 BETWEEN THE MILD AND MODERATE 7388 05:31:11,477 --> 05:31:14,747 GROUP WAS VERY SIGNIFICANT 7389 05:31:14,747 --> 05:31:15,848 DIFFERENCE IN THE PREVALENCES OF 7390 05:31:15,848 --> 05:31:17,583 OCULAR DISORDERS THAT WE WOULD 7391 05:31:17,583 --> 05:31:21,887 PICK UP AS OPHTHALMOLOGISTS. 7392 05:31:21,887 --> 05:31:24,423 NYSTAGMUS, OPERATIVE NERVE 7393 05:31:24,423 --> 05:31:24,757 PROBLEMS. 7394 05:31:24,757 --> 05:31:26,091 SO AGAIN WE HAVE TO BE CAREFUL 7395 05:31:26,091 --> 05:31:27,059 WITH THAT THOUGHT THAT THERE'S 7396 05:31:27,059 --> 05:31:28,260 NO EYE PROBLEM. 7397 05:31:28,260 --> 05:31:29,895 WE'VE SAID REPEATEDLY THIS 7398 05:31:29,895 --> 05:31:31,030 AFTERNOON, THERE ARE OFTEN 7399 05:31:31,030 --> 05:31:32,798 OCULAR ABNORMALITIES, AND IT 7400 05:31:32,798 --> 05:31:35,968 SEEMS LIKE THE WORST, THE CVI, 7401 05:31:35,968 --> 05:31:45,010 THE WORSE THE OP OPT M OPHTHALMY 7402 05:31:45,010 --> 05:31:46,378 QUESTIONS AS WELL. 7403 05:31:46,378 --> 05:31:47,613 SHOULD WE BE SCREENING ALL 7404 05:31:47,613 --> 05:31:49,481 CHILDREN WITH INTELLECTUAL 7405 05:31:49,481 --> 05:31:50,616 DISABILITY, IS ONE DYSFUNCTION 7406 05:31:50,616 --> 05:31:51,884 ENOUGH TO TALK ABOUT CVI. 7407 05:31:51,884 --> 05:31:54,153 SO IF YOU GO TO A CHILD WHO JUST 7408 05:31:54,153 --> 05:31:55,421 STRUGGLES IN CROWDED 7409 05:31:55,421 --> 05:31:57,389 ENVIRONMENTS, ARE WE GOING TO 7410 05:31:57,389 --> 05:31:58,591 CALL THAT CVI? 7411 05:31:58,591 --> 05:32:02,728 IF THEY'VE GOT A PEER -- BUT NO 7412 05:32:02,728 --> 05:32:04,530 OTHER PROBLEMS, IS THAT CVI? 7413 05:32:04,530 --> 05:32:06,899 TO ME THAT'S A CLEAR YES AS 7414 05:32:06,899 --> 05:32:09,001 OPPOSED TO AREA OF VISUAL 7415 05:32:09,001 --> 05:32:10,236 PATHWAY, SOME PEOPLE THINK 7416 05:32:10,236 --> 05:32:13,005 THERE'S GOT TO BE A BIT MORE 7417 05:32:13,005 --> 05:32:14,406 GENERALIZED VISUAL PROCESSING 7418 05:32:14,406 --> 05:32:21,680 PROBLEM FOR A DIAGNOSIS OF CVI. 7419 05:32:21,680 --> 05:32:24,750 DO YOU NEED ANYTHING OF NOTE IN 7420 05:32:24,750 --> 05:32:26,785 THE CLINICAL HISTORY, 7421 05:32:26,785 --> 05:32:27,553 PREMATURITY, THE ANSWER TO THAT 7422 05:32:27,553 --> 05:32:30,456 IS PROBABLY NO AS WE GAIN MORE 7423 05:32:30,456 --> 05:32:31,957 KNOWLEDGE ABOUT GENETIC CAUSES 7424 05:32:31,957 --> 05:32:35,127 OF CVI WHERE THERE'S NO APPARENT 7425 05:32:35,127 --> 05:32:38,664 HISTORY. 7426 05:32:38,664 --> 05:32:40,766 OCULOMOTOR PROBLEMS, I LOVE TO 7427 05:32:40,766 --> 05:32:42,935 TALK ABOUT THE EYE MOVEMENTS TO 7428 05:32:42,935 --> 05:32:44,403 MEASURE VISION, EMPHASIZING THAT 7429 05:32:44,403 --> 05:32:46,105 VISION HAS A MOTOR COMPONENT AS 7430 05:32:46,105 --> 05:32:48,641 WELL AS A SENSORY COMPONENT. 7431 05:32:48,641 --> 05:32:51,944 BUT I'M PICKING THOSE TWO CAN BE 7432 05:32:51,944 --> 05:32:52,978 DIFFICULT. 7433 05:32:52,978 --> 05:32:54,980 AND DO WE NEED SYMPTOMS? 7434 05:32:54,980 --> 05:32:57,549 SO IF WE START SCREENING PRIMARY 7435 05:32:57,549 --> 05:33:00,152 SCHOOL KIDS AND WE FIND THAT 7436 05:33:00,152 --> 05:33:04,156 SOMEONE HAS A VISUAL PROBLEM BUT 7437 05:33:04,156 --> 05:33:05,557 THEY HAVE NO SYMPTOMS IN 7438 05:33:05,557 --> 05:33:06,692 EVERYDAY LIFE, ARE WE GOING TO 7439 05:33:06,692 --> 05:33:08,227 GIVE THEM A LABEL OF CVI? 7440 05:33:08,227 --> 05:33:09,295 SO THAT'S A GOOD QUESTION AS 7441 05:33:09,295 --> 05:33:09,762 WELL. 7442 05:33:09,762 --> 05:33:10,296 SO IN FACT -- 7443 05:33:10,296 --> 05:33:11,230 >> ONE MINUTE. 7444 05:33:11,230 --> 05:33:13,098 >> I'M GOING TO INVITE -- I'M 7445 05:33:13,098 --> 05:33:15,868 GOING TO MISS OUT THE SYSTEMATIC 7446 05:33:15,868 --> 05:33:17,269 REVIEW, BUT I WILL INVITE YOU 7447 05:33:17,269 --> 05:33:20,072 ALL TO BECOME HONORARY EUROPEANS 7448 05:33:20,072 --> 05:33:21,941 BY CONTRIBUTING. 7449 05:33:21,941 --> 05:33:24,944 WHAT WE WANT TO POLL AS MANY 7450 05:33:24,944 --> 05:33:27,079 EXPERTS AS WE CAN ABOUT WHETHER 7451 05:33:27,079 --> 05:33:28,681 THOSE KIND OF QUESTIONS, AND OF 7452 05:33:28,681 --> 05:33:30,282 COURSE THERE ARE MORE QUESTIONS, 7453 05:33:30,282 --> 05:33:32,418 I ONLY PRESENTED A FEW, ARE THEY 7454 05:33:32,418 --> 05:33:33,585 THE RIGHT QUESTIONS, ARE THEY 7455 05:33:33,585 --> 05:33:36,488 MOIMPORTANT QUESTIONS OR HOW WOD 7456 05:33:36,488 --> 05:33:37,256 YOU REPHRASE THEM? 7457 05:33:37,256 --> 05:33:39,758 AND I'VE GOT A POLLING LINK THAT 7458 05:33:39,758 --> 05:33:40,960 JUST TAKES YOU THROUGH THOSE 7459 05:33:40,960 --> 05:33:42,227 QUESTIONS AND SAYS DO YOU THINK 7460 05:33:42,227 --> 05:33:43,662 THIS IS IMPORTANT, HAVE YOU GOT 7461 05:33:43,662 --> 05:33:45,497 ANY COMMENTS. 7462 05:33:45,497 --> 05:33:47,299 IF THE ORGANIZERS AGREE, I'LL 7463 05:33:47,299 --> 05:33:49,068 SEND THAT OUT FOR ANYONE WHO 7464 05:33:49,068 --> 05:33:50,602 WOULD LIKE TO, TO PARTICIPATE. 7465 05:33:50,602 --> 05:33:51,136 THANK YOU VERY MUCH. 7466 05:33:51,136 --> 05:33:57,476 [APPLAUSE] 7467 05:33:57,476 --> 05:33:58,077 >> THANK YOU. 7468 05:33:58,077 --> 05:33:59,411 NEXT WE'RE GOING TO MOVE INTO A 7469 05:33:59,411 --> 05:34:00,112 DISCUSSION SECTION FOR 10 7470 05:34:00,112 --> 05:34:01,347 MINUTES, SO IF ANY OF YOU HAVE 7471 05:34:01,347 --> 05:34:02,815 ANY QUESTIONS FOR ANY OF THE 7472 05:34:02,815 --> 05:34:04,984 PRIOR SPEAKERS SINCE THE LAST 7473 05:34:04,984 --> 05:34:06,085 DISCUSSION, PLEASE FEEL FREE TO 7474 05:34:06,085 --> 05:34:07,653 ASK THEM NOW AND OF COURSE YOU 7475 05:34:07,653 --> 05:34:10,489 CAN ASK THEM DURING THE FOCUS 7476 05:34:10,489 --> 05:34:12,358 GROUPS AFTER THAT OR AT ANY 7477 05:34:12,358 --> 05:34:13,325 POINT AFTER BECAUSE WE ONLY HAVE 7478 05:34:13,325 --> 05:34:18,931 10 MINUTES. 7479 05:34:18,931 --> 05:34:20,232 PLEASE COME UP TO THE MICROPHONE 7480 05:34:20,232 --> 05:34:21,367 AND ADDRESS YOUR SPEAKER 7481 05:34:21,367 --> 05:34:28,907 DIRECTLY. 7482 05:34:28,907 --> 05:34:34,913 >> DR. BOWMAN, YOU'RE NOT OFF 7483 05:34:34,913 --> 05:34:36,582 THE HOOK YET. 7484 05:34:36,582 --> 05:34:37,116 NO, THAT'S ALL RIGHT. 7485 05:34:37,116 --> 05:34:39,318 YOU TALKED ABOUT THE POTENTIAL 7486 05:34:39,318 --> 05:34:40,386 CONFOUND OF OCULAR ISSUES AND 7487 05:34:40,386 --> 05:34:42,187 HOW THAT IMPACTED SCORES AND 7488 05:34:42,187 --> 05:34:42,654 EVALUATION. 7489 05:34:42,654 --> 05:34:45,157 IS IT POSSIBLE TO TAKE THOSE 7490 05:34:45,157 --> 05:34:47,559 INDIVIDUALS OUT AND DARE I USE 7491 05:34:47,559 --> 05:34:49,361 THIS TERM, THINK OF PEURL CVI, 7492 05:34:49,361 --> 05:34:50,696 AND WHAT WOULD THOSE OUTCOMES 7493 05:34:50,696 --> 05:34:59,505 LOOK LIKE? 7494 05:34:59,505 --> 05:35:01,240 >> I SUPPOSE I WOULD MAYBE 7495 05:35:01,240 --> 05:35:02,474 CHALLENGE THE PREMISE OF THAT 7496 05:35:02,474 --> 05:35:03,342 QUESTION. 7497 05:35:03,342 --> 05:35:08,313 I THINK THAT CVI OFTEN DOES HAVE 7498 05:35:08,313 --> 05:35:11,150 OCULAR MOTOR PROBLEMS, OPTIC 7499 05:35:11,150 --> 05:35:12,684 NERVE PROBLEMS, WE KNOW THE 7500 05:35:12,684 --> 05:35:14,019 OPTIC NERVE IS ANATOMICALLY PART 7501 05:35:14,019 --> 05:35:15,387 OF THE BRAIN, SO I THINK IT 7502 05:35:15,387 --> 05:35:18,490 WOULD ACTUALLY BE A FALSE IDEA 7503 05:35:18,490 --> 05:35:19,525 TO REMOVE THOSE. 7504 05:35:19,525 --> 05:35:22,561 I THINK WE JUST NEED TO ALLOW 7505 05:35:22,561 --> 05:35:24,897 FOR THEM IN ALL OUR ANALYSIS. 7506 05:35:24,897 --> 05:35:26,098 THAT'S MY PERSONAL VIEW. 7507 05:35:26,098 --> 05:35:27,733 I'M SURE SOME PEOPLE MIGHT 7508 05:35:27,733 --> 05:35:38,310 DISAGDISAGREE, BUT -- 7509 05:35:39,778 --> 05:35:42,347 >> ANY OTHER QUESTIONS? 7510 05:35:42,347 --> 05:35:44,216 >> I HAVE AN ANSWER TO THE 7511 05:35:44,216 --> 05:35:45,117 PREVIOUS QUESTION. 7512 05:35:45,117 --> 05:35:48,087 >.SO YOU ASKED ABOUT MRI AND MRI 7513 05:35:48,087 --> 05:35:49,721 IN THE REGISTRY. 7514 05:35:49,721 --> 05:35:51,256 SO THERE ARE DEFINITELY A BUNCH 7515 05:35:51,256 --> 05:35:54,560 OF EXAMPLES AND MANY OF THEM ARE 7516 05:35:54,560 --> 05:35:56,195 NIH-FUNDED SPECIFICALLY FOR 7517 05:35:56,195 --> 05:35:59,064 LARGE SCALE DATABASES THAT HAVE 7518 05:35:59,064 --> 05:36:01,366 MULTI-SITES THAT USE MR IN 7519 05:36:01,366 --> 05:36:02,668 DIFFERENT IMAGING MODALITIES 7520 05:36:02,668 --> 05:36:04,870 LIKE PET, THE ALZHEIMER'S 7521 05:36:04,870 --> 05:36:07,172 DISEASE INITIATIVE, ALISON BRAIN 7522 05:36:07,172 --> 05:36:09,074 COGNITIVE DEVELOPMENT STUDY, 7523 05:36:09,074 --> 05:36:12,211 IBIS, YOU KNOW, THERE'S MANY OF 7524 05:36:12,211 --> 05:36:13,445 THEM. 7525 05:36:13,445 --> 05:36:14,780 AND TO GO ALONG WITH THAT, 7526 05:36:14,780 --> 05:36:16,081 BECAUSE THERE ARE MULTIPLE SITE, 7527 05:36:16,081 --> 05:36:18,617 THERE ARE ALSO, ON THE COMPUTER 7528 05:36:18,617 --> 05:36:21,453 SCIENCE DEVELOPMENT SIDE OF 7529 05:36:21,453 --> 05:36:22,688 THINGS, DIFFERENT TOOLS THAT ARE 7530 05:36:22,688 --> 05:36:24,756 BEING MADE AVAILABLE AND 7531 05:36:24,756 --> 05:36:26,892 DIFFERENT SOFTWARE PACKAGES TO 7532 05:36:26,892 --> 05:36:28,527 HELP OVERCOME SOME OF THE 7533 05:36:28,527 --> 05:36:30,262 DIFFERENCES IN SCANNER 7534 05:36:30,262 --> 05:36:31,063 PROTOCOLS, THINGS LIKE THAT. 7535 05:36:31,063 --> 05:36:32,664 PEOPLE ARE ALSO INCLUDING THEM 7536 05:36:32,664 --> 05:36:35,134 AS LIKE VARIABLES IN YOUR STATS, 7537 05:36:35,134 --> 05:36:37,736 SO THERE ARE DIFFERENT WAYS THAT 7538 05:36:37,736 --> 05:36:42,941 YOU CAN HELP SORT OF MITIGATE 7539 05:36:42,941 --> 05:36:45,677 AND OR/OR MINIMIZE OR ACCOUNT 7540 05:36:45,677 --> 05:36:46,879 FOR THOSE POTENTIAL DIFFERENCES. 7541 05:36:46,879 --> 05:36:48,046 THERE'S ALSO A PUSH IN THE 7542 05:36:48,046 --> 05:36:51,216 IMAGING FIELD TOO TO ALSO HAVE A 7543 05:36:51,216 --> 05:36:51,950 STANDARD DATA FORMAT. 7544 05:36:51,950 --> 05:36:53,919 IT CALLED BIDS. 7545 05:36:53,919 --> 05:36:55,354 I FORGET WHAT BIDS STANDS FOR 7546 05:36:55,354 --> 05:36:57,890 BUT YOU HAVE A NIFTI FILE AND 7547 05:36:57,890 --> 05:36:59,858 ALONG WITH THAT A JSON FILE, 7548 05:36:59,858 --> 05:37:02,261 IT'S LIKE A HUGE TEXT FILE THAT 7549 05:37:02,261 --> 05:37:04,296 GIVES YOUR MR PARAMETERS AS WELL 7550 05:37:04,296 --> 05:37:07,032 AS DETAILS RELATED TO LIKE THE 7551 05:37:07,032 --> 05:37:11,703 SCANNER ITSELF, YOUR ETR, ECHO, 7552 05:37:11,703 --> 05:37:12,905 EVERYTHING, SO YOU CAN THEN GO 7553 05:37:12,905 --> 05:37:14,072 IN AND LACK AT SOME OF THE 7554 05:37:14,072 --> 05:37:15,073 SPECIFIC VARIABLES. 7555 05:37:15,073 --> 05:37:17,409 SO IF YOU DO INCLUDE MR DATA IN 7556 05:37:17,409 --> 05:37:19,578 YOUR DATABASE, I WOULD ENCOURAGE 7557 05:37:19,578 --> 05:37:21,947 YOU TO HAVE PEOPLE UPLOAD IT IN 7558 05:37:21,947 --> 05:37:25,083 BIDS FORMAT SO IT CAN BE MORE 7559 05:37:25,083 --> 05:37:26,418 READILY, I THINK, USED. 7560 05:37:26,418 --> 05:37:27,786 IT'S LIKE A STANDARD DATA 7561 05:37:27,786 --> 05:37:28,921 STRUCTURE IN TERMS OF LIKE THE 7562 05:37:28,921 --> 05:37:35,127 FILE PATHS. 7563 05:37:35,127 --> 05:37:36,295 >> [INAUDIBLE] 7564 05:37:36,295 --> 05:37:38,797 >> SO DICOM IS GOOD, BUT THERE 7565 05:37:38,797 --> 05:37:40,199 ARE A COUPLE LIMITATIONS. 7566 05:37:40,199 --> 05:37:42,801 THERE ARE DIFFERENT TYPES OF 7567 05:37:42,801 --> 05:37:44,303 DICOMS, THERE ARE ENHANCED AND 7568 05:37:44,303 --> 05:37:45,237 CLASSIC. 7569 05:37:45,237 --> 05:37:48,540 CLASSIC DICOMS FOR RESTING STATE 7570 05:37:48,540 --> 05:37:50,342 SCAN, IN A CLASSIC YOU'RE GOING 7571 05:37:50,342 --> 05:37:51,643 TO HAVE THOUSANDS OF IMAGES 7572 05:37:51,643 --> 05:37:52,644 WHEREAS WITH THE BIDS, YOU'RE 7573 05:37:52,644 --> 05:37:55,447 GOING TO HAVE YOUR NIFTI AND 7574 05:37:55,447 --> 05:37:59,017 YOUR TEXT FILE. 7575 05:37:59,017 --> 05:37:59,785 SHE SAID THEY CAN ACCOMMODATE 7576 05:37:59,785 --> 05:38:01,887 FOR THAT. 7577 05:38:01,887 --> 05:38:04,389 YOU CAN USE EITHER BUT THERE'S A 7578 05:38:04,389 --> 05:38:06,491 PUSH IN THE FIELD FOR JUST USING 7579 05:38:06,491 --> 05:38:06,692 BIDS. 7580 05:38:06,692 --> 05:38:09,027 >> BECAUSE IT'S BUILT ON THE 7581 05:38:09,027 --> 05:38:10,195 TRAUMATIC BRAIN INJURY, THEY DO 7582 05:38:10,195 --> 05:38:12,364 HAVE LOTS OF MRIs AS AN 7583 05:38:12,364 --> 05:38:13,599 EXAMPLE SO THEY PROBABLY ALREADY 7584 05:38:13,599 --> 05:38:14,099 INCORPORATED THAT. 7585 05:38:14,099 --> 05:38:15,801 WE'LL MAKE SURE WE TAKE THAT 7586 05:38:15,801 --> 05:38:16,134 INTO ACCOUNT. 7587 05:38:16,134 --> 05:38:16,435 THANK YOU. 7588 05:38:16,435 --> 05:38:16,868 >> THANK YOU. 7589 05:38:16,868 --> 05:38:22,140 I HAVE A QUESTION FOR DR. HOFF. 7590 05:38:22,140 --> 05:38:24,376 SO THANK YOU SO MUCH FOR SHOWING 7591 05:38:24,376 --> 05:38:25,711 THOSE VIDEOS, THEY WERE REALLY 7592 05:38:25,711 --> 05:38:28,614 INTERESTING IN TERMS OF HOW THE 7593 05:38:28,614 --> 05:38:30,415 VISUOMOTOR TASK FOR KIDS WITH 7594 05:38:30,415 --> 05:38:30,916 CVI. 7595 05:38:30,916 --> 05:38:33,285 I'M SORRY WITH CP. 7596 05:38:33,285 --> 05:38:35,721 DO THEY HAVE AN EYE EXAMPLE, 7597 05:38:35,721 --> 05:38:37,823 WOULD IT BE DIFFERENT IN KIDS 7598 05:38:37,823 --> 05:38:39,858 WITH CVI VERSUS IN KIDS WITH CP 7599 05:38:39,858 --> 05:38:45,163 ALONE? 7600 05:38:45,163 --> 05:38:46,932 >> AT THIS POINT, WE'VE JUST 7601 05:38:46,932 --> 05:38:48,200 BEEN DOING -- WE'VE BEEN DOING 7602 05:38:48,200 --> 05:38:50,335 VISUAL ACUITY AND WE'VE BEEN 7603 05:38:50,335 --> 05:38:53,639 DOING JUST A GENERAL FIELD 7604 05:38:53,639 --> 05:38:54,206 TESTING. 7605 05:38:54,206 --> 05:38:55,974 I THINK WE ARE LOOKING TO EXPAND 7606 05:38:55,974 --> 05:38:57,242 TO DO A MORE COMPREHENSIVE EYE 7607 05:38:57,242 --> 05:38:58,777 EXAM WITH MORE MONEY, BUT I 7608 05:38:58,777 --> 05:39:00,045 THINK IT'S ALSO HARD BECAUSE 7609 05:39:00,045 --> 05:39:01,613 I'VE GOTTEN COMMENTS BEFORE, 7610 05:39:01,613 --> 05:39:03,115 WELL, YOU'RE EXCLUDING EVERY KID 7611 05:39:03,115 --> 05:39:03,882 WITH CVI, RIGHT? 7612 05:39:03,882 --> 05:39:05,117 AND I THINK THAT'S HARD BECAUSE 7613 05:39:05,117 --> 05:39:06,451 I DON'T THINK WE NECESSARILY 7614 05:39:06,451 --> 05:39:06,985 WANT TO DO THAT. 7615 05:39:06,985 --> 05:39:08,754 I THINK WE HAVE TOO MUCH 7616 05:39:08,754 --> 05:39:08,987 OVERLAP. 7617 05:39:08,987 --> 05:39:09,988 I DON'T THINK WE HAVE CLEAR 7618 05:39:09,988 --> 05:39:11,290 ENOUGH CRITERIA TO REALLY BE 7619 05:39:11,290 --> 05:39:12,524 ABLE TO DO THAT, SO I THINK WE 7620 05:39:12,524 --> 05:39:14,760 NEED TO REALLY THINK HARD ABOUT 7621 05:39:14,760 --> 05:39:17,029 WHAT ARE THERE MAYBE SPECIFIC 7622 05:39:17,029 --> 05:39:18,430 IMPAIRMENTS PARTS OF CVI THAT WE 7623 05:39:18,430 --> 05:39:19,564 WOULD WANT TO EXCLUDE, BECAUSE 7624 05:39:19,564 --> 05:39:21,166 THEY WOULD IMPACT OUR DATA 7625 05:39:21,166 --> 05:39:22,200 COLLECTION, BUT I THINK 7626 05:39:22,200 --> 05:39:23,402 OTHERWISE WE PROBABLY NEED TO 7627 05:39:23,402 --> 05:39:24,903 LOOK MORE HOLISTICALLY AND JUST 7628 05:39:24,903 --> 05:39:26,905 WORK ON BETTER ASSESSMENTS TO 7629 05:39:26,905 --> 05:39:31,843 TOK EUMENTDOCUMENT THE VISUAL I. 7630 05:39:31,843 --> 05:39:34,146 >> I THINK IT WILL BE GREAT TO 7631 05:39:34,146 --> 05:39:35,781 HAVE A DOCUMENTED STUDY. 7632 05:39:35,781 --> 05:39:39,117 >> HOW DIVERSE IS YOUR HIGH 7633 05:39:39,117 --> 05:39:40,519 FUNCTIONING CVI GROUP, AND WHAT 7634 05:39:40,519 --> 05:39:43,155 KIND OF TESTS DO YOU DO TO 7635 05:39:43,155 --> 05:39:44,956 DIAGNOSE AND TO QUALIFY FOR YOUR 7636 05:39:44,956 --> 05:39:48,894 STUDIES? 7637 05:39:48,894 --> 05:39:50,395 >> SO THIS STUDY, THIS 7638 05:39:50,395 --> 05:39:54,032 PARTICULAR STUDY FOR HIGH 7639 05:39:54,032 --> 05:39:55,367 FUNCTION CVI WERE REFERRALS TO 7640 05:39:55,367 --> 05:39:57,069 OUR EYE DEPARTMENT, REFERRALS 7641 05:39:57,069 --> 05:40:00,205 FROM THE NEUROLOGIST, REFERRALS 7642 05:40:00,205 --> 05:40:07,112 FROM PEDIATRICIANS WHO HAD -- 7643 05:40:07,112 --> 05:40:08,814 THEY CAME IN WITH MRI SCANS AND 7644 05:40:08,814 --> 05:40:10,515 ALL THE DETAILS AND THEY SAY 7645 05:40:10,515 --> 05:40:11,283 THEY SUSPECTED CVI. 7646 05:40:11,283 --> 05:40:14,052 SO WHEN WE DID THE PARENT 7647 05:40:14,052 --> 05:40:15,587 INTERVIEW, WE FOUND THAT, YES, 7648 05:40:15,587 --> 05:40:17,456 THEY HAD THE PERCEPTUAL DEFICIT, 7649 05:40:17,456 --> 05:40:20,125 AND THEY HAD INDEPENDENT 7650 05:40:20,125 --> 05:40:25,063 NEUROLOGICAL DIAGNOSIS, AND MRI 7651 05:40:25,063 --> 05:40:25,931 DIAGNOSIS, 31 HAD MRI SCANS. 7652 05:40:25,931 --> 05:40:27,265 ONE OF THEM WAS MISSING BECAUSE 7653 05:40:27,265 --> 05:40:28,266 THEY CAME FROM A DIFFERENT 7654 05:40:28,266 --> 05:40:29,768 CENTER AND ONE OF THEM HADN'T 7655 05:40:29,768 --> 05:40:30,268 HAD ONE. 7656 05:40:30,268 --> 05:40:32,738 ALL THE OTHER 31 HAD AN 7657 05:40:32,738 --> 05:40:33,405 IDENTIFIABLE LESION IN THE 7658 05:40:33,405 --> 05:40:34,740 BRAIN. 7659 05:40:34,740 --> 05:40:38,076 BUT WE SINCE HAVE ADDED 59 7660 05:40:38,076 --> 05:40:39,044 CHILDREN, OUT OF WHICH ANOTHER 7661 05:40:39,044 --> 05:40:41,346 20 IS NORMAL VISUAL ACUITY, AND 7662 05:40:41,346 --> 05:40:42,781 SOME OF THEM HAVE COMPLETELY 7663 05:40:42,781 --> 05:40:44,416 NORMAL MRI SCANS, BUT THEY HAVE 7664 05:40:44,416 --> 05:40:47,986 A WHOLE SPECTRUM OF VISUAL 7665 05:40:47,986 --> 05:40:50,088 PERCEPTUAL DEFICITS AND DEFINITE 7666 05:40:50,088 --> 05:40:50,856 DIAGNOSIS OF CVI. 7667 05:40:50,856 --> 05:40:54,092 BUT THAT STUDY, THE OLDEST 7668 05:40:54,092 --> 05:40:55,794 DIAGNOSIS IS MADE INDEPENDENTLY, 7669 05:40:55,794 --> 05:40:59,197 AND WE DID HAVE THE VISUAL 7670 05:40:59,197 --> 05:41:00,499 QUESTION -- THE TESTER DID NOT 7671 05:41:00,499 --> 05:41:01,700 KNOW WHAT THE DIAGNOSIS WAS, AND 7672 05:41:01,700 --> 05:41:03,402 THE PARENT DID NOT KNOW THAT 7673 05:41:03,402 --> 05:41:09,307 THIS WAS THE PURPOSE OF THIS. 7674 05:41:09,307 --> 05:41:11,576 >> I'M GOING TO ASSUME THAT BY 7675 05:41:11,576 --> 05:41:12,978 DIVERSITY, YOU'RE REFERRING TO 7676 05:41:12,978 --> 05:41:14,346 LIKE DIVERSITY OF THE CLINICAL 7677 05:41:14,346 --> 05:41:14,813 PROFILE? 7678 05:41:14,813 --> 05:41:20,719 OKAY. 7679 05:41:20,719 --> 05:41:22,454 >> I GUESS IT IMPACT THEIR DAILY 7680 05:41:22,454 --> 05:41:24,089 LIFE IN A VARIETY OF DIFFERENT 7681 05:41:24,089 --> 05:41:24,689 WAYS. 7682 05:41:24,689 --> 05:41:25,824 AS YOU CAN IMAGINE. 7683 05:41:25,824 --> 05:41:27,793 SO WE DON'T ACTUALLY DO THE 7684 05:41:27,793 --> 05:41:29,261 DIAGNOSES OURSELVES. 7685 05:41:29,261 --> 05:41:30,595 YOU KNOW, I'M A SCIENTIST, I 7686 05:41:30,595 --> 05:41:31,997 CAN'T DO THAT. 7687 05:41:31,997 --> 05:41:33,932 BUT THEY ARE SEEN BY A NUMBER OF 7688 05:41:33,932 --> 05:41:35,233 DIFFERENT CLINICIANS, MANY OF 7689 05:41:35,233 --> 05:41:38,503 THEM IN THE BOSTON AREA WHO USE 7690 05:41:38,503 --> 05:41:39,504 A VARIETY OF DIFFERENT 7691 05:41:39,504 --> 05:41:41,640 TECHNIQUES TO DIAGNOSE. 7692 05:41:41,640 --> 05:41:42,941 KEEPING IN CONTEXT HOW THE 7693 05:41:42,941 --> 05:41:44,342 VISION IMPACTS THEIR DAILY 7694 05:41:44,342 --> 05:41:46,011 FUNCTIONS. 7695 05:41:46,011 --> 05:41:49,781 BUT YEAH, I WOULD SAY HALF OR SO 7696 05:41:49,781 --> 05:41:52,951 HAVE PRETTY VISIBLE LESIONS. 7697 05:41:52,951 --> 05:41:54,653 THERE IS A RANGE OF DIFFERENT 7698 05:41:54,653 --> 05:41:54,886 CAUSES. 7699 05:41:54,886 --> 05:41:58,089 I THINK THE LEADING CAUSE SO FAR 7700 05:41:58,089 --> 05:42:00,959 HAS BEEN PVL, BUT NOT ALL OF 7701 05:42:00,959 --> 05:42:01,159 THEM. 7702 05:42:01,159 --> 05:42:03,261 SOME HAVE GENETIC DISORDERS, 7703 05:42:03,261 --> 05:42:07,799 SOME HAVE, YOU KNOW, BIRTH 7704 05:42:07,799 --> 05:42:09,234 EVENTS -- YEAH, A MIX. 7705 05:42:09,234 --> 05:42:13,605 AND LIKE MAYBE A THIRD HAVE 7706 05:42:13,605 --> 05:42:14,272 CEREBRAL PALSY. 7707 05:42:14,272 --> 05:42:19,678 SO IT'S PRETTY DIVERSE. 7708 05:42:19,678 --> 05:42:22,047 >> THIS IS A QUESTION FOR 7709 05:42:22,047 --> 05:42:25,484 DR. BOWMAN AND ALSO FOR THE TEAM 7710 05:42:25,484 --> 05:42:27,352 AT NEI AND THAT IS, IS YOUR 7711 05:42:27,352 --> 05:42:29,354 GROUP CONSIDERING A REGISTRY 7712 05:42:29,354 --> 05:42:33,692 LIKE WE ARE HERE, AND IF SO, 7713 05:42:33,692 --> 05:42:34,960 WHAT'S THE POTENTIAL FOR LINKING 7714 05:42:34,960 --> 05:42:40,165 IT WITH WHAT WE'RE DOING? 7715 05:42:40,165 --> 05:42:43,001 >> NO, WE'RE NOT CONSIDERING A 7716 05:42:43,001 --> 05:42:43,768 REGISTRY. 7717 05:42:43,768 --> 05:42:44,169 [LAUGHTER] 7718 05:42:44,169 --> 05:42:48,573 I MEAN, IN THE UK, WE HAVE AN 7719 05:42:48,573 --> 05:42:52,277 EXISTING REGISTRATION FOR VISUAL 7720 05:42:52,277 --> 05:42:53,678 IMPAIRMENT IN CHILDREN AND 7721 05:42:53,678 --> 05:42:57,148 ADULTS, AND ON THAT FORM, WE PUT 7722 05:42:57,148 --> 05:42:58,783 THE CAUSE, AND THE LEVEL OF 7723 05:42:58,783 --> 05:43:00,952 VISION, WHETHER IT'S SEVERE OR 7724 05:43:00,952 --> 05:43:02,787 PARTIALLY SIGHTED. 7725 05:43:02,787 --> 05:43:05,624 SO THAT ENABLES US TO JUST TRACK 7726 05:43:05,624 --> 05:43:07,325 DIFFERENT CAUSES. 7727 05:43:07,325 --> 05:43:09,094 BUT NO, WE'RE NOT SPECIFICALLY 7728 05:43:09,094 --> 05:43:12,931 LOOKING AT CVI REGISTRY. 7729 05:43:12,931 --> 05:43:13,565 >> THANK YOU. 7730 05:43:13,565 --> 05:43:16,167 WE'LL GO AHEAD AND MOVE NEXT TO 7731 05:43:16,167 --> 05:43:16,668 THE FOCUS GROUPS. 7732 05:43:16,668 --> 05:43:18,236 IF YOU LOOK ON THE BACK OF YOUR 7733 05:43:18,236 --> 05:43:19,204 NAME TAG, YOU SHOULD HAVE THE 7734 05:43:19,204 --> 05:43:20,672 NAME OF WHICH FOCUS GROUP YOU'VE 7735 05:43:20,672 --> 05:43:21,740 BEEN ASSIGNED TO AS WELL AS THE 7736 05:43:21,740 --> 05:43:23,642 LOCATION AND THEN DO WE HAVE A 7737 05:43:23,642 --> 05:43:23,842 SLIDE? 7738 05:43:23,842 --> 05:43:26,077 >> ARE WE COMING BACK HERE? 7739 05:43:26,077 --> 05:43:28,046 >> SO, YES, AFTERWARDS, SO THE 7740 05:43:28,046 --> 05:43:29,381 FOCUS GROUPS WILL BE FOR HALF AN 7741 05:43:29,381 --> 05:43:30,849 HOUR AND THEN WE'LL COME BACK 7742 05:43:30,849 --> 05:43:33,351 HERE AT 4:30 TO DISCUSS OUR 7743 05:43:33,351 --> 05:43:33,618 FINDINGS. 7744 05:43:33,618 --> 05:43:34,819 IN THE FOLDER, THERE ARE 7745 05:43:34,819 --> 05:43:35,887 DISCUSSION QUESTIONS FOR YOU TO 7746 05:43:35,887 --> 05:43:36,488 CONSIDER. 7747 05:43:36,488 --> 05:43:38,690 AND IF YOU WERE HERE YESTERDAY 7748 05:43:38,690 --> 05:43:40,292 AND YOU DID NOT GET A NEW NAME 7749 05:43:40,292 --> 05:43:41,626 TAG, YOU DON'T HAVE YOUR GROUP 7750 05:43:41,626 --> 05:43:42,994 ASSIGNMENT SO YOU NEED TO GET A 7751 05:43:42,994 --> 05:43:47,240 NEW NAME TAG. 7752 05:44:03,553 --> 05:44:04,687 LET'S TAKE OUR SEATS SO WE CAN 7753 05:44:04,687 --> 05:44:14,898 GET STARTED. 7754 05:44:19,502 --> 05:44:22,439 IF YOU ARE REPORTING OUT FOR 7755 05:44:22,439 --> 05:44:32,882 YOUR GROUP -- [INAUDIBLE] 7756 05:44:55,839 --> 05:44:57,440 >> LET'S JUST GO ONE BY ONE. 7757 05:44:57,440 --> 05:44:58,541 DO WE HAVE A REPRESENTATIVE FOR 7758 05:44:58,541 --> 05:45:01,911 THE ACCOMMODATIONS AND EDUCATION 7759 05:45:01,911 --> 05:45:04,080 GROUP HERE? 7760 05:45:04,080 --> 05:45:04,948 ALL RIGHT, CHRISTINE. 7761 05:45:04,948 --> 05:45:07,584 GO AHEAD. 7762 05:45:07,584 --> 05:45:10,720 >> OKAY. 7763 05:45:10,720 --> 05:45:12,822 WE SOLVED THIS PROBLEM 7764 05:45:12,822 --> 05:45:18,161 COMPLETELY, WE WANT YOU TO KNOW. 7765 05:45:18,161 --> 05:45:22,265 ACTUALLY -- CHRISTINE ROMAN. 7766 05:45:22,265 --> 05:45:23,399 DO YOU WANT TO START BY TALKING 7767 05:45:23,399 --> 05:45:24,300 ABOUT WHAT YOU -- 7768 05:45:24,300 --> 05:45:24,834 >> SURE. 7769 05:45:24,834 --> 05:45:26,469 >> DO YOU WANT TO USE THE MIC? 7770 05:45:26,469 --> 05:45:32,041 THERE WE GO. 7771 05:45:32,041 --> 05:45:34,511 >> I'M KRISTIE, I MET SOME OF 7772 05:45:34,511 --> 05:45:36,513 YOU YESTERDAY, PROGRAM DIRECTOR 7773 05:45:36,513 --> 05:45:38,815 AT NINDS BUT I ALSO WAS A 7774 05:45:38,815 --> 05:45:42,886 RESEARCHER FOR A LONG TIME. 7775 05:45:42,886 --> 05:45:44,020 AND ONE OF THE METRICS THAT I 7776 05:45:44,020 --> 05:45:46,289 THOUGHT WOULD BE HELPFUL IN OUR 7777 05:45:46,289 --> 05:45:48,124 GROUP WHICH WAS ACCOMMODATIONS 7778 05:45:48,124 --> 05:45:51,060 IN EDUCATION THAT WAS A GOOD, I 7779 05:45:51,060 --> 05:45:53,997 THOUGHT, SIMPLE IB INDICATOR THT 7780 05:45:53,997 --> 05:45:54,964 WOULD SPEAK TO SOCIAL 7781 05:45:54,964 --> 05:45:57,800 DETERMINANTS OF HEALTH IS THE 7782 05:45:57,800 --> 05:45:59,035 CHILD OPPORTUNITY INDEX. 7783 05:45:59,035 --> 05:46:01,938 AND THIS IS AN ALTERNATE OR IN 7784 05:46:01,938 --> 05:46:07,744 ADDITION TO THE ADI, WHICH IS 7785 05:46:07,744 --> 05:46:10,246 THE AREA DEPRIVATION INDEX? 7786 05:46:10,246 --> 05:46:12,415 YES, OKAY, GREAT. 7787 05:46:12,415 --> 05:46:14,817 AND IT'S SPECIFIC TO CHILD -- 7788 05:46:14,817 --> 05:46:15,985 THINGS THAT ARE RELEVANT TO 7789 05:46:15,985 --> 05:46:16,452 CHILDREN. 7790 05:46:16,452 --> 05:46:18,922 AND SO WHAT THIS IS IS A 29 7791 05:46:18,922 --> 05:46:19,889 INDICATORS OF SOCIAL 7792 05:46:19,889 --> 05:46:21,891 DETERMINANTS OF HEALTH WHICH 7793 05:46:21,891 --> 05:46:23,293 MAKES THE COMPOSITE AND ITS AT 7794 05:46:23,293 --> 05:46:25,528 THE LEVEL OF THE UNITED STATES 7795 05:46:25,528 --> 05:46:26,296 CENSUS TRACT. 7796 05:46:26,296 --> 05:46:29,098 AND SO IT REALLY IS A SINGLE 7797 05:46:29,098 --> 05:46:31,200 EASY INDICATOR THAT IF YOU ARE 7798 05:46:31,200 --> 05:46:33,069 SOMEONE WHO'S ENTERING THIS DATA 7799 05:46:33,069 --> 05:46:34,871 CAN BE DONE WITH SIMPLY THE 7800 05:46:34,871 --> 05:46:35,905 CHILD'S ADDRESS, WHICH YOU DO 7801 05:46:35,905 --> 05:46:38,374 NOT NEED TO INPUT INDIRECTLY, 7802 05:46:38,374 --> 05:46:42,045 YOU CAN PUT THE ADDRESS INTO A 7803 05:46:42,045 --> 05:46:44,347 SITE WHICH WILL TELL YOU WHAT 7804 05:46:44,347 --> 05:46:46,416 THE CHILD OPPORTUNITY INDEX IS 7805 05:46:46,416 --> 05:46:48,284 FOR THAT SPECIFIC ADDRESS AND 7806 05:46:48,284 --> 05:46:49,886 THAT'S WHAT CAN BE INPUT. 7807 05:46:49,886 --> 05:46:52,155 BUT WHAT IT WILL HELP US DO IS 7808 05:46:52,155 --> 05:46:53,923 IT A VERY EASY METRIC THAT HAS 7809 05:46:53,923 --> 05:46:55,725 BEEN VALIDATED IN MANY, MANY, 7810 05:46:55,725 --> 05:46:57,093 MANY DIFFERENT KINDS OF STUDIES 7811 05:46:57,093 --> 05:46:59,429 THAT TELLS US ABOUT THE 7812 05:46:59,429 --> 05:47:02,398 OPPORTUNITIES IN EDUCATION, IN 7813 05:47:02,398 --> 05:47:05,735 FOOD, HEALTH, PLAYGROUNDS, 7814 05:47:05,735 --> 05:47:07,837 LIBRARIES, WHAT ARE THE 7815 05:47:07,837 --> 05:47:08,605 AGGREGATED OPPORTUNITIES THAT 7816 05:47:08,605 --> 05:47:10,139 CHILDREN HAVE AT THEIR LEVEL, 7817 05:47:10,139 --> 05:47:13,710 WHICH CAN HELP US INFORM MANY 7818 05:47:13,710 --> 05:47:15,011 QUESTIONS, CERTAINLY SOMETHING 7819 05:47:15,011 --> 05:47:17,213 ABOUT WHAT MIGHT THAT CHILD'S 7820 05:47:17,213 --> 05:47:18,881 ACCESS BE TO EDUCATIONAL SUPPORT 7821 05:47:18,881 --> 05:47:19,816 AND ACCOMMODATIONS. 7822 05:47:19,816 --> 05:47:21,317 >> THANK YOU. 7823 05:47:21,317 --> 05:47:24,721 WE ALSO TALKED ABOUT CREATING A 7824 05:47:24,721 --> 05:47:28,891 LIST OF WHAT ACCOMMODATIONS 7825 05:47:28,891 --> 05:47:32,328 REALLY SORT OF A COMPARE AND 7826 05:47:32,328 --> 05:47:34,297 CONTRAST, WHAT A CHILD -- JUST A 7827 05:47:34,297 --> 05:47:35,932 WHOLE LIST OF THINGS A CHILD 7828 05:47:35,932 --> 05:47:37,634 COULD POTENTIALLY RECEIVE IN 7829 05:47:37,634 --> 05:47:38,735 SCHOOL, AND WHAT THEY ARE 7830 05:47:38,735 --> 05:47:40,503 RECEIVING AND WHAT THE PARENTS 7831 05:47:40,503 --> 05:47:41,604 PERCEIVE THE NEEDS ARE. 7832 05:47:41,604 --> 05:47:43,172 SO WHAT IS THE CHILD GETTING, 7833 05:47:43,172 --> 05:47:45,775 WHAT DOES THE PARENT FEEL THE 7834 05:47:45,775 --> 05:47:46,676 CHILD NEEDS. 7835 05:47:46,676 --> 05:47:47,844 LOOKING AT THOSE TWO THINGS 7836 05:47:47,844 --> 05:47:49,579 TOGETHER COULD BE REALLY VERY 7837 05:47:49,579 --> 05:47:51,214 INTERESTING TO SEE, BECAUSE IT 7838 05:47:51,214 --> 05:47:52,448 COULD JUST BE A LIST AND THE 7839 05:47:52,448 --> 05:47:54,283 LIST COULD BE DUPLICATED AND 7840 05:47:54,283 --> 05:47:55,785 RESPONDED TO DIFFERENTLY. 7841 05:47:55,785 --> 05:47:58,988 WE TALKED ABOUT A WAY FOR A 7842 05:47:58,988 --> 05:48:01,090 PARENT TO ONCE THEIR CHILD IS 7843 05:48:01,090 --> 05:48:02,959 IDENTIFIED AS HAVING CVI, BEING 7844 05:48:02,959 --> 05:48:04,327 ABLE TO CLICK ON SOMETHING THAT 7845 05:48:04,327 --> 05:48:05,528 DIRECTS THEM TO THE RESOURCES IN 7846 05:48:05,528 --> 05:48:06,596 THEIR COMMUNITY, TO BE ABLE TO 7847 05:48:06,596 --> 05:48:08,197 FIND OUT MORE ABOUT PARENT 7848 05:48:08,197 --> 05:48:09,298 GROUPS AND EDUCATION. 7849 05:48:09,298 --> 05:48:12,135 WE TALKED ABOUT UNIVERSITY 7850 05:48:12,135 --> 05:48:13,569 PROGRAMS BUT THEN THAT KIND OF 7851 05:48:13,569 --> 05:48:14,704 DOVETAILED INTO NOT JUST 7852 05:48:14,704 --> 05:48:16,506 UNIVERSITY PROGRAMS FOR 7853 05:48:16,506 --> 05:48:18,241 EDUCATORS BUT REALLY ALL 7854 05:48:18,241 --> 05:48:20,410 PRE-SERVICE TRAINING IN ALL 7855 05:48:20,410 --> 05:48:23,346 THINGS, FROM MEDICINE TO THERAPY 7856 05:48:23,346 --> 05:48:27,050 SERVICES, PT/OT/SPEECH, VISION, 7857 05:48:27,050 --> 05:48:29,018 EVERYBODY NEEDS MORE PRE-SERVICE 7858 05:48:29,018 --> 05:48:30,053 TRAINING THAT WOULD ACTUALLY 7859 05:48:30,053 --> 05:48:32,555 HOPEFULLY TRICKLE DOWN TO 7860 05:48:32,555 --> 05:48:34,791 EDUCATION AND ACCOMMODATIONS. 7861 05:48:34,791 --> 05:48:38,761 WE TALKED BRIEFLY ABOUT TESTING, 7862 05:48:38,761 --> 05:48:39,962 THAT IT'S IMPORTANT TO THINK 7863 05:48:39,962 --> 05:48:41,164 ABOUT FAIR CONSIDERATIONS FOR 7864 05:48:41,164 --> 05:48:43,166 TESTING, SO THAT A CHILD DOESN'T 7865 05:48:43,166 --> 05:48:44,934 GET PIGEONHOLED AND STAY IN THAT 7866 05:48:44,934 --> 05:48:46,169 SPOT THEIR WHOLE EDUCATIONAL 7867 05:48:46,169 --> 05:48:48,337 LIFE. 7868 05:48:48,337 --> 05:48:50,139 COORDINATED CARE, THAT WAS AN 7869 05:48:50,139 --> 05:48:51,240 ISSUE THAT WE TALKED ABOUT 7870 05:48:51,240 --> 05:48:52,909 SOMEBODY HAS TO BE A TEAM 7871 05:48:52,909 --> 05:48:53,443 LEADER. 7872 05:48:53,443 --> 05:48:55,278 IT MAY OR MAY NOT BE A TEACHER 7873 05:48:55,278 --> 05:48:57,113 OF THE VISUALLY IMPAIRED, MAY OR 7874 05:48:57,113 --> 05:48:59,849 MAY NOT BE AN O & M PERSON, 7875 05:48:59,849 --> 05:49:01,484 SOMEBODY HAS TO COORDINATE THIS, 7876 05:49:01,484 --> 05:49:03,186 BECAUSE IF WE STAY IN OUR SILOS, 7877 05:49:03,186 --> 05:49:04,053 THAT'S PRETTY DEADLY. 7878 05:49:04,053 --> 05:49:05,388 THEN ON THE WAY OUT THE DOOR, WE 7879 05:49:05,388 --> 05:49:07,423 SAID WHAT ABOUT AUTISM? 7880 05:49:07,423 --> 05:49:08,891 SO IN 30 MINUTES, WE COULDN'T 7881 05:49:08,891 --> 05:49:10,660 SOLVE THAT PROBLEM, BUT WHAT DID 7882 05:49:10,660 --> 05:49:12,628 I MISS? 7883 05:49:12,628 --> 05:49:14,263 ANYTHING? 7884 05:49:14,263 --> 05:49:21,738 >> [INAUDIBLE] 7885 05:49:21,738 --> 05:49:23,539 >> WHO'S GETTING COORDINATED 7886 05:49:23,539 --> 05:49:25,041 CARE, WHO'S NOT, AND THEN TO 7887 05:49:25,041 --> 05:49:26,242 ADDRESS THAT AS WELL, YES. 7888 05:49:26,242 --> 05:49:28,311 AND WHO HAS LIKE A CASE MANAGER 7889 05:49:28,311 --> 05:49:30,279 THAT TAKES CARE OF -- BRINGS 7890 05:49:30,279 --> 05:49:31,380 EVERYBODY TO THE TABLE, WHETHER 7891 05:49:31,380 --> 05:49:32,915 IT'S AT SCHOOL, MEDICAL, ACROSS 7892 05:49:32,915 --> 05:49:35,151 ALL THOSE SERVICES. 7893 05:49:35,151 --> 05:49:36,319 IF I MISSED ANYTHING, PLEASE 7894 05:49:36,319 --> 05:49:36,853 FEEL FREE. 7895 05:49:36,853 --> 05:49:38,354 >> PERFECT TIMING. 7896 05:49:38,354 --> 05:49:41,124 LET'S MOVE ON TO 7897 05:49:41,124 --> 05:49:47,497 TEENAGERS/ADULTS WITH CVI. 7898 05:49:47,497 --> 05:49:48,865 >> HELLO. 7899 05:49:48,865 --> 05:49:50,633 SHARON LEHMAN. 7900 05:49:50,633 --> 05:49:54,103 WE HAD A LIVELY DISCUSSION ABOUT 7901 05:49:54,103 --> 05:49:56,739 THIS TOPIC. 7902 05:49:56,739 --> 05:50:00,343 THE FIRST REPORT OUT IS THAT WE 7903 05:50:00,343 --> 05:50:02,478 FEEL THAT OUTCOMES ARE DIFFERENT 7904 05:50:02,478 --> 05:50:04,013 FOR TEENS AND ADULTS THAN 7905 05:50:04,013 --> 05:50:05,882 CHILDREN, AND WE WOULD WANT TO 7906 05:50:05,882 --> 05:50:08,684 CAPTURE THINGS LIKE SECONDARY 7907 05:50:08,684 --> 05:50:10,987 EDUCATION, EMPLOYMENT, THE 7908 05:50:10,987 --> 05:50:13,289 ABILITY TO HAVE INDEPENDENT 7909 05:50:13,289 --> 05:50:15,658 TRAVEL, THE ABILITY TO DRIVE, 7910 05:50:15,658 --> 05:50:18,728 WHAT THEIR HOUSING IS, BECAUSE 7911 05:50:18,728 --> 05:50:21,864 THAT WILL REALLY SHOW THEIR 7912 05:50:21,864 --> 05:50:24,300 INDEPENDENCE, AND THEN SOMEHOW 7913 05:50:24,300 --> 05:50:26,569 MEASURE SOCIAL RELATIONSHIPS. 7914 05:50:26,569 --> 05:50:28,671 AND THAT WOULD BE FOR THE 7915 05:50:28,671 --> 05:50:30,506 REGISTRY. 7916 05:50:30,506 --> 05:50:32,108 AND WHAT WAS ALSO FELT TO BE 7917 05:50:32,108 --> 05:50:36,612 VERY IMPORTANT WAS SOMEHOW 7918 05:50:36,612 --> 05:50:40,316 BREAKING OUT AGE OF INJURY, AGE 7919 05:50:40,316 --> 05:50:43,352 OF ONSET OF SYMPTOMS AND AGE OF 7920 05:50:43,352 --> 05:50:45,922 DIAGNOSIS. 7921 05:50:45,922 --> 05:50:49,025 AND SOMEHOW CAPTURING THOSE 7922 05:50:49,025 --> 05:50:51,127 THREE THINGS. 7923 05:50:51,127 --> 05:50:52,829 AN INJURY MEANING, YOU KNOW, NOT 7924 05:50:52,829 --> 05:50:55,131 EVERYBODY WILL HAVE AN INJURY. 7925 05:50:55,131 --> 05:50:57,433 WE'RE TRYING TO, YOU KNOW, CAST 7926 05:50:57,433 --> 05:51:00,036 A WIDE NET HERE. 7927 05:51:00,036 --> 05:51:02,839 INJURY OR INSULT OR KNOWN 7928 05:51:02,839 --> 05:51:07,577 DISEASE PROCESS. 7929 05:51:07,577 --> 05:51:10,112 AND THEN IT WAS THOUGHT VERY 7930 05:51:10,112 --> 05:51:13,716 IMPORTANT THAT CVI SUSPECT BE 7931 05:51:13,716 --> 05:51:16,285 BROUGHT UP, AND WE TALKED ABOUT 7932 05:51:16,285 --> 05:51:19,822 THAT A LOT YESTERDAY. 7933 05:51:19,822 --> 05:51:20,790 TO INCLUDE THAT, AND THAT WOULD 7934 05:51:20,790 --> 05:51:21,891 BE REALLY HELPFUL. 7935 05:51:21,891 --> 05:51:24,594 AND THEN THE LAST THING IN OUR 7936 05:51:24,594 --> 05:51:26,062 GROUP, THERE WAS A STRONG 7937 05:51:26,062 --> 05:51:31,267 FEELING THAT WE SHOULD INCLU 7938 05:51:31,267 --> 05:51:32,268 INCLUDE -- WHO HAVE DISEASE THAT 7939 05:51:32,268 --> 05:51:34,303 COMES ON IN THEIR ADULT YEARS, 7940 05:51:34,303 --> 05:51:36,706 NOT JUST FOLLOWING CHILDREN WHO 7941 05:51:36,706 --> 05:51:43,779 GROW UP, BUT ALSO LOOKING AT 7942 05:51:43,779 --> 05:51:46,816 ADULT ONSET CVI. 7943 05:51:46,816 --> 05:51:53,990 ANY OTHER -- ANYBODY? 7944 05:51:53,990 --> 05:51:54,590 >> GREAT. 7945 05:51:54,590 --> 05:51:55,892 I AM THE REPRESENTATIVE FOR OUR 7946 05:51:55,892 --> 05:51:57,126 GROUP ON CVI WITH MULTIPLE 7947 05:51:57,126 --> 05:51:57,860 DISABILITIES. 7948 05:51:57,860 --> 05:51:59,595 SORRY YOU HAVE TO HEAR ME AGAIN. 7949 05:51:59,595 --> 05:52:00,696 WE TALKED ABOUT WHAT WAS 7950 05:52:00,696 --> 05:52:03,165 IMPORTANT TO THIS GROUP INCLUDES 7951 05:52:03,165 --> 05:52:05,568 DISENTATANGLING SYMPTOMS RELATED 7952 05:52:05,568 --> 05:52:06,869 TO VISUAL OR OTHER DISABILITIES, 7953 05:52:06,869 --> 05:52:08,471 TRYING TO FIND TESTS THAT CAN BE 7954 05:52:08,471 --> 05:52:09,939 APPLIED ACROSS THE DEVELOPMENTAL 7955 05:52:09,939 --> 05:52:11,073 AGE SPECTRUM AS WELL AS 7956 05:52:11,073 --> 05:52:12,108 ABILITIES AND THERE WAS A LOT OF 7957 05:52:12,108 --> 05:52:16,345 TALK ABOUT HOW DR. PRESKE'S WORK 7958 05:52:16,345 --> 05:52:17,947 WAS VERY PROMISING AND WHAT 7959 05:52:17,947 --> 05:52:18,414 INTERVENTIONS MAY BE 7960 05:52:18,414 --> 05:52:21,017 APPROPRIATE. 7961 05:52:21,017 --> 05:52:22,652 AND PEOPLE -- AS WELL AS WHAT 7962 05:52:22,652 --> 05:52:23,419 OUTCOMES ARE APPROPRIATE TO 7963 05:52:23,419 --> 05:52:24,220 MEASURE. 7964 05:52:24,220 --> 05:52:24,820 ALSO ONE THING THAT'S VERY 7965 05:52:24,820 --> 05:52:26,122 IMPORTANT I THINK FOR THIS GROUP 7966 05:52:26,122 --> 05:52:28,791 IS HOW THEY COMMUNICATE, ACCESS 7967 05:52:28,791 --> 05:52:30,726 TO COMMUNICATION AND AC DEVICES, 7968 05:52:30,726 --> 05:52:32,228 CAN THEY USE VISION TO 7969 05:52:32,228 --> 05:52:34,196 COMMUNICATE, CAN THEY USE EYE 7970 05:52:34,196 --> 05:52:35,831 TRACKERS, WHAT CHANGES TO EYE 7971 05:52:35,831 --> 05:52:36,899 TRACKERS NEED TO BE MADE SO THEY 7972 05:52:36,899 --> 05:52:38,768 CAN USE THEM, AN ALSO WE WANTED 7973 05:52:38,768 --> 05:52:40,469 TO ACKNOWLEDGE NAI'S POINT 7974 05:52:40,469 --> 05:52:41,370 EARLIER IN THE DAY THAT WE 7975 05:52:41,370 --> 05:52:42,638 SHOULDN'T TALK ABOUT CVI JUST AS 7976 05:52:42,638 --> 05:52:43,973 A DEFICIT, BUT THEY MAY HAVE 7977 05:52:43,973 --> 05:52:46,075 OTHER SENSES THAT ARE ACTUALLY 7978 05:52:46,075 --> 05:52:47,376 SUPER NORMAL IN A WAY THAT HELP 7979 05:52:47,376 --> 05:52:48,744 THEM TO ENGAGE AND MAXIMIZE 7980 05:52:48,744 --> 05:52:49,745 THEIR FUNCTION AND WE SHOULD TRY 7981 05:52:49,745 --> 05:52:51,180 TO CAPTURE THAT IN THE REGISTRY 7982 05:52:51,180 --> 05:52:53,282 AS WELL. 7983 05:52:53,282 --> 05:52:57,053 AND WE TALKED ABOUT SOME OF THAT 7984 05:52:57,053 --> 05:52:58,054 DIAGNOSTIC ASSESSMENTS MAY NOT 7985 05:52:58,054 --> 05:52:59,555 BE ABLE TO BE PERFORMED BY 7986 05:52:59,555 --> 05:53:00,990 CHILDREN WHO HAVE MULTIPLE 7987 05:53:00,990 --> 05:53:02,191 DISABILITIES, SO WE SHOULDN'T 7988 05:53:02,191 --> 05:53:03,960 REQUIRE LIKE ONE SINGLE 7989 05:53:03,960 --> 05:53:04,727 ASSESSMENT FOR DIAGNOSIS OR TO 7990 05:53:04,727 --> 05:53:06,295 BE INCLUDED IN THE REGISTRY. 7991 05:53:06,295 --> 05:53:08,164 WE REALLY NEED TO MAKE IT 7992 05:53:08,164 --> 05:53:10,299 FLEXIBLE IN TERMS OF INCLUSION 7993 05:53:10,299 --> 05:53:10,967 CRITERIA. 7994 05:53:10,967 --> 05:53:14,103 AND THEN WE TALKED A LOT ABOUT 7995 05:53:14,103 --> 05:53:15,604 AWARENESS THAT REALLY AWARENESS 7996 05:53:15,604 --> 05:53:18,641 NEEDS TO INCREASE IN ALL GROUPS, 7997 05:53:18,641 --> 05:53:20,176 PCPs, NEONATOLOGIST, 7998 05:53:20,176 --> 05:53:21,610 DEVELOPMENTAL PEDIATRICIAN, 7999 05:53:21,610 --> 05:53:23,312 EARLY INTERVENTION, PMR, NEWER 8000 05:53:23,312 --> 05:53:24,647 OL JIS AND OPHTHALMOLOGISTS. 8001 05:53:24,647 --> 05:53:25,881 WE SPECIFICALLY POINTED OUT 8002 05:53:25,881 --> 05:53:26,849 RETINA SPECIALISTS BECAUSE WE 8003 05:53:26,849 --> 05:53:28,951 TALKED ABOUT HOW SOME PATIENTS 8004 05:53:28,951 --> 05:53:30,920 WHO GRADUATE FROM ROP ARE TOLD 8005 05:53:30,920 --> 05:53:32,154 THEIR VISION IS NOW FINE BECAUSE 8006 05:53:32,154 --> 05:53:34,256 THEIR ROP HAS RESOLVED THAT, IN 8007 05:53:34,256 --> 05:53:35,558 FACT, THEIR VISION IS NOT FINE 8008 05:53:35,558 --> 05:53:36,292 BECAUSE THEY HAVE CVI. 8009 05:53:36,292 --> 05:53:37,827 AND THEN LASTLY, WE TALKED ABOUT 8010 05:53:37,827 --> 05:53:42,264 HOW SOME OF THESE FAMILIES -- 8011 05:53:42,264 --> 05:53:44,467 THEY FEEL VISION IS THE LEAST OF 8012 05:53:44,467 --> 05:53:45,835 THEIR PROBLEMS, THE FAMILIES 8013 05:53:45,835 --> 05:53:46,769 THEMSELVES NEED TO BE EDUCATED 8014 05:53:46,769 --> 05:53:47,837 BECAUSE IF THEY CAN USE THEIR 8015 05:53:47,837 --> 05:53:49,472 VISION IN A WAY TO ACCESS THEIR 8016 05:53:49,472 --> 05:53:53,175 EDUCATIONAL MATERIAL, IT CAN 8017 05:53:53,175 --> 05:53:54,010 REALLY BE LIFE CHANGING FOR 8018 05:53:54,010 --> 05:53:54,610 THEM. 8019 05:53:54,610 --> 05:53:55,845 ANYONE ELSE FROM MY GROUP HAVE 8020 05:53:55,845 --> 05:53:57,713 ANYTHING TO ADD? 8021 05:53:57,713 --> 05:53:58,147 NO? 8022 05:53:58,147 --> 05:53:58,914 OKAY. 8023 05:53:58,914 --> 05:54:00,683 LET'S MOVE ON TO GLOBAL 8024 05:54:00,683 --> 05:54:03,986 PERSPECTIVE ON CVI. 8025 05:54:03,986 --> 05:54:04,820 >> HI. 8026 05:54:04,820 --> 05:54:05,454 I'M LINDA LAWRENCE. 8027 05:54:05,454 --> 05:54:07,323 WE HAD A GREAT DISCUSSION. 8028 05:54:07,323 --> 05:54:11,160 FIRST OF ALL, THE WHOLE WORLD 8029 05:54:11,160 --> 05:54:12,228 OUT THERE IS LOOKING AT WHAT 8030 05:54:12,228 --> 05:54:14,096 WE'RE DOING HERE, BECAUSE EVERY 8031 05:54:14,096 --> 05:54:16,065 COUNTRY I WORK IN WANT TO DO A 8032 05:54:16,065 --> 05:54:17,700 REGISTRY TOO. 8033 05:54:17,700 --> 05:54:19,835 THE BIG THING, YOU KNOW, IN THE 8034 05:54:19,835 --> 05:54:21,170 LOW RESOURCE COUNTRIES, THEY 8035 05:54:21,170 --> 05:54:23,072 DON'T HAVE AS MANY RESOURCES TO 8036 05:54:23,072 --> 05:54:25,074 TAKE CARE OF THE KIDS ONCE 8037 05:54:25,074 --> 05:54:26,442 THEY'RE DIAGNOSED WITH CVI, SO 8038 05:54:26,442 --> 05:54:27,810 THEY'RE INTERESTED IN 8039 05:54:27,810 --> 05:54:29,879 ETIOLOGIES, SO THERE CAN BE MORE 8040 05:54:29,879 --> 05:54:30,613 PRIMARY PREVENTION. 8041 05:54:30,613 --> 05:54:32,114 TRYING TO FIGURE OUT, FOR 8042 05:54:32,114 --> 05:54:33,682 EXAMPLE, IN INDIA, THEY HAVE A 8043 05:54:33,682 --> 05:54:36,652 LOT MORE NEONATAL HYPOGLYCEMIA 8044 05:54:36,652 --> 05:54:37,820 THAT LEAD TO CVI AND THAT'S 8045 05:54:37,820 --> 05:54:41,957 SOMETHING THAT IF WE KNEW HOW 8046 05:54:41,957 --> 05:54:43,526 DOES THAT HAPPEN, WE COULD 8047 05:54:43,526 --> 05:54:44,460 POSSIBLY PREVENT THAT AND SAVE 8048 05:54:44,460 --> 05:54:46,429 KIDS FROM GETTING CVI. 8049 05:54:46,429 --> 05:54:48,297 WE ALSO FELT THAT THERE SHOULD 8050 05:54:48,297 --> 05:54:51,100 BE TARGETED SCREENING LIKE IN 8051 05:54:51,100 --> 05:54:52,435 SPECIAL SCHOOLS WHICH IS ALREADY 8052 05:54:52,435 --> 05:54:54,303 BEING DONE IN A LOT OF 8053 05:54:54,303 --> 05:54:55,704 COUNTRIES. 8054 05:54:55,704 --> 05:54:56,906 AND WE NEED TO HAVE THE TOOLS 8055 05:54:56,906 --> 05:54:59,742 THAT ARE LOW COST, EASY TO 8056 05:54:59,742 --> 05:55:01,377 TRANSPORT, AND NOT ONLY JUST FOR 8057 05:55:01,377 --> 05:55:02,912 THE DEVELOPING WORLD, BUT WE 8058 05:55:02,912 --> 05:55:04,080 EVEN TALKED ABOUT FOR SOME OF 8059 05:55:04,080 --> 05:55:06,949 OUR PEDIATRIC OPHTHALMOLOGISTS 8060 05:55:06,949 --> 05:55:09,351 HERE WHO DON'T HAVE TELLER CARDS 8061 05:55:09,351 --> 05:55:11,420 OR IF WE PUT TELLER CARDS AS THE 8062 05:55:11,420 --> 05:55:13,155 SCREEN FOR VISUAL ACUITY, THAT'S 8063 05:55:13,155 --> 05:55:14,557 GOING TO TAKE A LOT OF KID OUT 8064 05:55:14,557 --> 05:55:17,326 OF THE MIX. 8065 05:55:17,326 --> 05:55:21,664 SO THERE ARE SOME LOW COST -- 8066 05:55:21,664 --> 05:55:22,965 GRADING PADDLES AND THINGS LIKE 8067 05:55:22,965 --> 05:55:24,834 THAT THAT ARE PRETTY AVAILABLE. 8068 05:55:24,834 --> 05:55:27,436 ALSO TO TRY AND FIGURE OUT A LOW 8069 05:55:27,436 --> 05:55:29,572 COST -- ANOTHER LOW COST WAY, 8070 05:55:29,572 --> 05:55:30,506 JUST A QUESTION HERE AND THAT 8071 05:55:30,506 --> 05:55:32,341 MIGHT BE A WAY THAT ESPECIALLY 8072 05:55:32,341 --> 05:55:33,909 IN A DEVELOPING WORLD WHERE 8073 05:55:33,909 --> 05:55:36,946 RESOURCES ARE LOW THAT THEY CAN 8074 05:55:36,946 --> 05:55:38,581 FIND KIDS THAT HAVE FALLEN 8075 05:55:38,581 --> 05:55:40,316 THROUGH THE CRACKS LIKE WE HEARD 8076 05:55:40,316 --> 05:55:40,783 ABOUT TODAY. 8077 05:55:40,783 --> 05:55:43,486 THEY WOULD HAVE A TOOL THAT'S 8078 05:55:43,486 --> 05:55:44,520 INEXPENSIVE, PEOPLE CAN BE 8079 05:55:44,520 --> 05:55:45,888 TRAINED, THERE'S A LOT OF SMART 8080 05:55:45,888 --> 05:55:47,089 PEOPLE WHO ARE VERY DEDICATED 8081 05:55:47,089 --> 05:55:47,756 OUT THERE. 8082 05:55:47,756 --> 05:55:49,358 I JUST WANT TO RE-EMPHASIZE 8083 05:55:49,358 --> 05:55:52,661 THEY'RE WAITING FOR US. 8084 05:55:52,661 --> 05:55:53,095 >> THANK YOU. 8085 05:55:53,095 --> 05:55:54,396 ANYBODY ELSE? 8086 05:55:54,396 --> 05:55:57,700 FROM MY TEAM? 8087 05:55:57,700 --> 05:55:58,901 >> THANKS, LINDA. 8088 05:55:58,901 --> 05:56:00,269 NEXT WE HAVE THE CAREGIVER 8089 05:56:00,269 --> 05:56:02,805 PERSPECTIVE. 8090 05:56:02,805 --> 05:56:06,075 >> HI, EVERYONE. 8091 05:56:06,075 --> 05:56:07,409 KERRY, REPORTING OUT FOR A GROUP 8092 05:56:07,409 --> 05:56:09,211 LED BARRE CHEL BENNETT, A BUNCH 8093 05:56:09,211 --> 05:56:11,413 OF OTHER FOLKS AROUND THE TABLE 8094 05:56:11,413 --> 05:56:12,948 PROVIDED SOME REALLY GREAT INPUT 8095 05:56:12,948 --> 05:56:15,151 FROM THE CAREGIVER PERSPECTIVE, 8096 05:56:15,151 --> 05:56:18,187 WHICH I THINK WE SHOULD DEFINE A 8097 05:56:18,187 --> 05:56:19,388 LITTLE BIT BETTER. 8098 05:56:19,388 --> 05:56:21,323 SO ONE OF OUR PROVIDERS ACTUALLY 8099 05:56:21,323 --> 05:56:22,658 FEELS HE IS A CAREGIVER TOO, AND 8100 05:56:22,658 --> 05:56:23,759 I THINK THAT IS GREAT. 8101 05:56:23,759 --> 05:56:25,127 THAT'S WHAT WE NEED, EVERYONE IS 8102 05:56:25,127 --> 05:56:26,695 ON A TEAM. 8103 05:56:26,695 --> 05:56:29,265 SO CAREGIVER CAN BE A LOT OF 8104 05:56:29,265 --> 05:56:31,600 THINGS TO A LOT OF PEOPLE. 8105 05:56:31,600 --> 05:56:33,235 BUT I THINK FOR OUR PURPOSES WE 8106 05:56:33,235 --> 05:56:34,737 WERE TRYING TO LOOK AT THIS FROM 8107 05:56:34,737 --> 05:56:37,273 THE CAREGIVER IN TERMS OF THE 8108 05:56:37,273 --> 05:56:39,608 PARENTS AND OTHER PEOPLE IN THE 8109 05:56:39,608 --> 05:56:42,745 CLOSE PROXIMITY OF SOMEONE'S 8110 05:56:42,745 --> 05:56:44,180 24/7 DAILY LIVING. 8111 05:56:44,180 --> 05:56:47,983 SO WE COVERED SOME TOPICS IN 8112 05:56:47,983 --> 05:56:50,152 QUESTIONS 1, 3 AND 5, SO 8113 05:56:50,152 --> 05:56:51,687 FOCUSING ON WHAT THE REGISTRY IS 8114 05:56:51,687 --> 05:56:55,191 GOING TO ADDRESS. 8115 05:56:55,191 --> 05:56:57,193 WE HAD SOME OF THE SAME CONCEPTS 8116 05:56:57,193 --> 05:57:00,896 AS BEFORE, LIKE WHEN WERE THE 8117 05:57:00,896 --> 05:57:03,065 INITIAL ONSET OF SYMPTOMS, WHEN 8118 05:57:03,065 --> 05:57:06,302 DID THE PROVIDER -- OR THE CARE 8119 05:57:06,302 --> 05:57:07,403 PROVIDER FIRST RECOGNIZE THAT 8120 05:57:07,403 --> 05:57:08,404 SOMETHING WAS DIFFERENT ABOUT 8121 05:57:08,404 --> 05:57:11,473 THEIR CHILD AND WHAT WAS IT, 8122 05:57:11,473 --> 05:57:13,375 WHAT TOOLS WERE USED FOR THAT 8123 05:57:13,375 --> 05:57:14,944 DIAGNOSIS, WHAT KIND OF 8124 05:57:14,944 --> 05:57:16,812 PROVIDERS AND HOW MANY DL THEY 8125 05:57:16,812 --> 05:57:20,482 DID THEYSEE BEFORE THEY RECEIVEI 8126 05:57:20,482 --> 05:57:21,784 DIAGNOSIS, WERE THERE OTHER 8127 05:57:21,784 --> 05:57:22,785 THINGS PRESENTED, WHO FIRST 8128 05:57:22,785 --> 05:57:25,421 SUGGESTED THAT SIEVE CO CVI COUA 8129 05:57:25,421 --> 05:57:26,922 POTENTIAL DIAGNOSIS. 8130 05:57:26,922 --> 05:57:28,791 WHAT TOOLS DID THEY USE? 8131 05:57:28,791 --> 05:57:31,293 THERE WAS A LOT OF REALLY GREAT 8132 05:57:31,293 --> 05:57:33,596 DISCUSSION ABOUT REAL WORLD 8133 05:57:33,596 --> 05:57:34,797 FUNCTIONING, AND WE TALKED ABOUT 8134 05:57:34,797 --> 05:57:36,632 THE NEED TO ENGAGE WITH THOSE 8135 05:57:36,632 --> 05:57:38,667 COMMUNITIES AND I MENTIONED THAT 8136 05:57:38,667 --> 05:57:40,903 FOR ANOTHER PROJECT, WE ARE 8137 05:57:40,903 --> 05:57:41,604 WORKING DIRECTLY WITH PEOPLE 8138 05:57:41,604 --> 05:57:44,506 WITH LIVED EXPERIENCE TO DEVELOP 8139 05:57:44,506 --> 05:57:46,909 THOSE TOOLS. 8140 05:57:46,909 --> 05:57:48,110 ERIKA HAS BEEN MEETING WITH THEM 8141 05:57:48,110 --> 05:57:49,845 OFTEN AND I THINK THAT IS A GOOD 8142 05:57:49,845 --> 05:57:50,446 WAY. 8143 05:57:50,446 --> 05:57:51,413 WE ALSO TALKED ABOUT EVEN THOUGH 8144 05:57:51,413 --> 05:57:53,983 WE WANT TO TRY TO GET STRUCTURED 8145 05:57:53,983 --> 05:57:54,984 DATA LEAVING AN OPPORTUNITY FOR 8146 05:57:54,984 --> 05:57:56,619 A FREE TEXT FIELD FOR PEOPLE TO 8147 05:57:56,619 --> 05:57:58,454 PROVIDE NARRATIVES AND OBVIOUSLY 8148 05:57:58,454 --> 05:57:59,989 WE'RE NOT GOING TO CAPTURE 8149 05:57:59,989 --> 05:58:01,457 EVERYTHING TA EVERYONE 8150 05:58:01,457 --> 05:58:03,926 EXPERIENCES, SO MAKING SURE WE 8151 05:58:03,926 --> 05:58:05,261 DO ALLOW FOR THAT OPTION AS 8152 05:58:05,261 --> 05:58:06,095 WELL. 8153 05:58:06,095 --> 05:58:07,863 LET'S SEE. 8154 05:58:07,863 --> 05:58:11,600 OH, ONE REALLY SALIENT POINT WAS 8155 05:58:11,600 --> 05:58:16,405 ABOUT COMPENSATORY SKILLS, AND 8156 05:58:16,405 --> 05:58:19,441 SOME OF THE FOLKS WITH CVI HAVE 8157 05:58:19,441 --> 05:58:21,610 LEARNED REALLY AMAZING SKILLS, 8158 05:58:21,610 --> 05:58:23,712 LIKE I HEARD THE STORY ABOUT A 8159 05:58:23,712 --> 05:58:25,214 TODDLER WHO TAUGHT HIMSELF TO 8160 05:58:25,214 --> 05:58:28,751 SEE WITH WORDS THROUGH ART AS A 8161 05:58:28,751 --> 05:58:30,352 TODDLER, AND PASSES AS FULLY 8162 05:58:30,352 --> 05:58:32,655 SIGHTED, SO THAT'S REALLY 8163 05:58:32,655 --> 05:58:33,956 AMAZING, AND JUST WHAT SKILLS 8164 05:58:33,956 --> 05:58:39,328 THESE KIDS HAVE VELLED ON THEIRN 8165 05:58:39,328 --> 05:58:40,929 THEIR OWN CAPTURING THAT IN A 8166 05:58:40,929 --> 05:58:42,031 DATA-DRIVEN WAY. 8167 05:58:42,031 --> 05:58:43,232 WHAT KINDS OF THINGS ARE 8168 05:58:43,232 --> 05:58:44,900 FATIGUING AND HOW DO FOLKS 8169 05:58:44,900 --> 05:58:46,168 COMPENSATE FOR THAT, ALSO A BIG 8170 05:58:46,168 --> 05:58:47,336 AREA OF INTEREST FOR THIS 8171 05:58:47,336 --> 05:58:50,572 COMMUNITY. 8172 05:58:50,572 --> 05:58:52,207 SO THAT WAS SOME OF THE THINGS I 8173 05:58:52,207 --> 05:58:55,311 THINK WE COVERED A LOT OF GROUND 8174 05:58:55,311 --> 05:58:57,546 IN THE WHAT DATA TO CAPTURE, AND 8175 05:58:57,546 --> 05:59:00,516 WE JUST SCRATCHED THE SURFACE. 8176 05:59:00,516 --> 05:59:01,817 BUT THERE WAS A REALLY GREAT 8177 05:59:01,817 --> 05:59:03,452 CONVERSATION TOO ABOUT WHO 8178 05:59:03,452 --> 05:59:07,956 INITIATES THE PROCESS OF 8179 05:59:07,956 --> 05:59:09,992 CONNECTING WITH A REGISTRY, SO 8180 05:59:09,992 --> 05:59:11,560 WE WERE DISCUSSING THAT THIS 8181 05:59:11,560 --> 05:59:13,395 SHOULD REALLY BE OPEN-ENDED AND 8182 05:59:13,395 --> 05:59:15,431 THERE SHOULD BE MANY AVENUES TO 8183 05:59:15,431 --> 05:59:18,567 CONNECTING WITH THE REGISTRY. 8184 05:59:18,567 --> 05:59:21,904 SO THIS COULD BE THAT A PARENT 8185 05:59:21,904 --> 05:59:24,807 OR A PERSON WITH CVI FIRST 8186 05:59:24,807 --> 05:59:26,041 CONNECTS WITH A REGISTRY 8187 05:59:26,041 --> 05:59:27,343 THEMSELVES AND I THINK WE HAD 8188 05:59:27,343 --> 05:59:28,811 TALKED ABOUT THIS THROUGHOUT THE 8189 05:59:28,811 --> 05:59:31,613 MEETING THAT WE WANT DATA 8190 05:59:31,613 --> 05:59:34,149 COLLECTED FROM DIFFERENT ASPECTS 8191 05:59:34,149 --> 05:59:36,318 OF THE DIAGNOSIS, AND SO WE WANT 8192 05:59:36,318 --> 05:59:39,955 INFORMATION FROM PROVIDERS, 8193 05:59:39,955 --> 05:59:41,323 CAREGIVERS, DVIs ON ALL OF 8194 05:59:41,323 --> 05:59:42,758 THAT, BUT WE SHOULD BE OPEN TO 8195 05:59:42,758 --> 05:59:45,728 WHO INITIATES THAT CONVERSATION 8196 05:59:45,728 --> 05:59:48,197 WITH OUR COORDINATING CENTER, 8197 05:59:48,197 --> 05:59:49,498 BECAUSE THERE'S A COUPLE THINGS 8198 05:59:49,498 --> 05:59:49,832 AT PLAY. 8199 05:59:49,832 --> 05:59:52,468 SO IT COULD BE THAT A FAMILY IS 8200 05:59:52,468 --> 05:59:54,336 VERY DRIVEN TO BE PART OF THIS 8201 05:59:54,336 --> 05:59:56,071 RESEARCH, IT MIGHT LEAD THE 8202 05:59:56,071 --> 05:59:57,706 CLINICIAN TO ENTER INFORMATION. 8203 05:59:57,706 --> 06:00:01,443 WE FOUND WITH IG ACTUALLY IT 8204 06:00:01,443 --> 06:00:03,746 TOOK SOMETIMES THE PERSON, THE 8205 06:00:03,746 --> 06:00:05,347 FAMILY, TO PUSH THEIR DOCTOR TO 8206 06:00:05,347 --> 06:00:06,682 ENTER DATA ONLINE BECAUSE LET'S 8207 06:00:06,682 --> 06:00:09,518 BE REAL, THEY ARE KINDA BUSY, SO 8208 06:00:09,518 --> 06:00:11,153 HAVING THAT AS ONE AVENUE CAN BE 8209 06:00:11,153 --> 06:00:11,820 REALLY POWERFUL. 8210 06:00:11,820 --> 06:00:16,425 BUT THERE COULD ALSO BE 8211 06:00:16,425 --> 06:00:17,493 PROVIDERS, CLINICAL PROVIDERS 8212 06:00:17,493 --> 06:00:19,661 WHO REALIZE THAT THE PARTICIPANT 8213 06:00:19,661 --> 06:00:22,731 IS GOING TO HAVE -- AND SORRY 8214 06:00:22,731 --> 06:00:24,700 I'M AT THE NIH AND WE ALWAYS 8215 06:00:24,700 --> 06:00:25,968 REFER TO PEOPLE AT PARTICIPANTS 8216 06:00:25,968 --> 06:00:26,769 INSTEAD OF PATIENTS SO IF YOU 8217 06:00:26,769 --> 06:00:28,170 HEAR THAT, THAT'S KIND OF -- 8218 06:00:28,170 --> 06:00:29,505 I'VE BEEN TRAINED TO SAY THAT. 8219 06:00:29,505 --> 06:00:31,240 SO THAT'S WHAT I MEAN, IS THE 8220 06:00:31,240 --> 06:00:34,109 PATIENT, SO THE PROVIDER'S 8221 06:00:34,109 --> 06:00:35,644 PATIENT MIGHT BE IDENTIFIED AS 8222 06:00:35,644 --> 06:00:37,246 SOMEONE WHO HAS NO INTERNET OR 8223 06:00:37,246 --> 06:00:39,214 NO EMAIL AND SO IT MIGHT BE 8224 06:00:39,214 --> 06:00:42,718 BETTER IN THOSE INSTANCES THAT 8225 06:00:42,718 --> 06:00:44,553 THAT PROVIDER INITIATES THE 8226 06:00:44,553 --> 06:00:46,021 ENTRY INTO THE REGISTRATION. 8227 06:00:46,021 --> 06:00:49,258 IT COULD EVEN BE THAT TBIs ARE 8228 06:00:49,258 --> 06:00:50,726 INITIATING THAT, THEY IDENTIFY 8229 06:00:50,726 --> 06:00:51,894 SOMETHING AND THEY WANT TO 8230 06:00:51,894 --> 06:00:52,928 CONNECT THE FAMILIES AND THE 8231 06:00:52,928 --> 06:00:54,496 PROVIDERS TO ENTERING, SO JUST 8232 06:00:54,496 --> 06:00:56,031 KEEPING IN MIND THAT WE WANT TO 8233 06:00:56,031 --> 06:00:57,866 BE REALLY OPEN-ENDED ON 8234 06:00:57,866 --> 06:01:00,436 DIFFERENT AVENUES TO CONNECT. 8235 06:01:00,436 --> 06:01:02,337 AND THEN THERE WAS A GOOD BIT OF 8236 06:01:02,337 --> 06:01:04,973 DISCUSSION ABOUT PROMOTING 8237 06:01:04,973 --> 06:01:06,175 AWARENESS, AND JUST ON A 8238 06:01:06,175 --> 06:01:12,815 PERSONAL LEVEL, I FEEL LIKE 8239 06:01:12,815 --> 06:01:15,884 THAT'S WHAT I HOPE THE REGISTRY 8240 06:01:15,884 --> 06:01:19,755 ENABLES MORE, BUT PROMOTING HOW 8241 06:01:19,755 --> 06:01:23,692 CVI -- ALL THE STUFF, HOW CVI IS 8242 06:01:23,692 --> 06:01:27,062 DIAGNOSED, PROMOTING EARLY 8243 06:01:27,062 --> 06:01:29,431 INTERVENTION, TEACHING PARENTS 8244 06:01:29,431 --> 06:01:30,766 HOW BABIES USE THEIR VISION 8245 06:01:30,766 --> 06:01:33,836 BECAUSE A LOT OF THE PARENTS, 8246 06:01:33,836 --> 06:01:35,103 THIS COULD BE THEIR FIRST KID, 8247 06:01:35,103 --> 06:01:36,805 THEY DON'T REALLY UNDERSTAND 8248 06:01:36,805 --> 06:01:38,841 THAT THEY'RE SEEING RAPID EYE 8249 06:01:38,841 --> 06:01:40,709 MOVEMENTS AND THAT MIGHT BE AN 8250 06:01:40,709 --> 06:01:42,711 INDICATION TO LOOK FOR AN 8251 06:01:42,711 --> 06:01:43,212 OPHTHALMOLOGY VISIT. 8252 06:01:43,212 --> 06:01:47,382 SO TEACHING NEW FAMILIES ABOUT 8253 06:01:47,382 --> 06:01:47,950 THAT. 8254 06:01:47,950 --> 06:01:51,887 THEN PROMOTING THIS THROUGH 8255 06:01:51,887 --> 06:01:54,389 APOS, AO, FOR US IT'S RVO, THE 8256 06:01:54,389 --> 06:01:57,793 VISION RESEARCH ORGANIZATION, SO 8257 06:01:57,793 --> 06:01:59,228 JUST KEEP PROMOTING WHAT WE'RE 8258 06:01:59,228 --> 06:02:00,262 DOING WITH THOSE COMMUNITIES. 8259 06:02:00,262 --> 06:02:02,264 AND THEN IF I LEFT ANYTHING OUT, 8260 06:02:02,264 --> 06:02:06,034 PLEASE. 8261 06:02:06,034 --> 06:02:08,737 >> THANK YOU. 8262 06:02:08,737 --> 06:02:10,005 LAST ONE. 8263 06:02:10,005 --> 06:02:12,441 >> GOOD AFTERNOON. 8264 06:02:12,441 --> 06:02:14,743 I'M SHEFFA GORDON FROM THE 8265 06:02:14,743 --> 06:02:15,277 NATIONAL EYE INSTITUTE. 8266 06:02:15,277 --> 06:02:16,411 MIGHT BE THE LAST SPEAKER OF THE 8267 06:02:16,411 --> 06:02:16,612 DAY. 8268 06:02:16,612 --> 06:02:17,379 IT'S BEEN A LONG DAY. 8269 06:02:17,379 --> 06:02:19,114 THANK YOU, EVERYONE, FOR BEARING 8270 06:02:19,114 --> 06:02:21,617 WITH US. 8271 06:02:21,617 --> 06:02:23,151 I AM PARTLY RESPONSIBLE FOR THE 8272 06:02:23,151 --> 06:02:24,253 VERY AMBITIOUS AGENDA. 8273 06:02:24,253 --> 06:02:25,587 WE'VE HAD SOME GREAT SPEAKERS, 8274 06:02:25,587 --> 06:02:26,455 GREAT TALKS. 8275 06:02:26,455 --> 06:02:28,757 I KNOW WE BLEW THROUGH A BUNCH 8276 06:02:28,757 --> 06:02:30,425 OF BREAKS, SO THANKS, EVERYONE, 8277 06:02:30,425 --> 06:02:31,560 HERE, FOR BEARING WITH US AND 8278 06:02:31,560 --> 06:02:33,629 FOR THOSE OF THE 400 PEOPLE WHO 8279 06:02:33,629 --> 06:02:38,834 REGISTERED FOR THE WEBCAST, 8280 06:02:38,834 --> 06:02:40,102 THANK YOU FOR JOINING US, AND IT 8281 06:02:40,102 --> 06:02:42,404 IS RECORDED SO YOU CAN CATCH UP 8282 06:02:42,404 --> 06:02:44,506 WHAT YOU MAY HAVE MISSED 8283 06:02:44,506 --> 06:02:45,207 AFTER -- IT SHOULD BE OUT IN 8284 06:02:45,207 --> 06:02:47,409 ABOUT A WEEK IF YOU CHECK THE 8285 06:02:47,409 --> 06:02:51,013 NIH WEBSITE. 8286 06:02:51,013 --> 06:02:52,414 OUR FOCUS GROUP WAS FOCUS ON 8287 06:02:52,414 --> 06:02:56,685 BUILDING AWARENESS AND ADVOCACY. 8288 06:02:56,685 --> 06:02:58,253 KRISTIE HAD TO RUN TO CATCH AN 8289 06:02:58,253 --> 06:02:59,755 AIRPLANE SO I'M REPORTING OUT. 8290 06:02:59,755 --> 06:03:01,723 WE START OUT BY TALKING ABOUT 8291 06:03:01,723 --> 06:03:05,227 THE ELEPHANT IN THE ROOM, 8292 06:03:05,227 --> 06:03:06,328 LITERALLY THE ELEPHANT WE SAW IN 8293 06:03:06,328 --> 06:03:07,729 THE VERY FIRST SLIDE TODAY THAT 8294 06:03:07,729 --> 06:03:10,899 SKIP SHOWED US THAT SHOWED ALL 8295 06:03:10,899 --> 06:03:13,869 THE DIFFERENT PROVIDERS WITH 8296 06:03:13,869 --> 06:03:15,637 SEEING DIFFERENT FACETS OF AN 8297 06:03:15,637 --> 06:03:16,838 ELEPHANT, THE TAIL AND THE 8298 06:03:16,838 --> 06:03:18,774 TRUNK, YOU GET DIFFERENT 8299 06:03:18,774 --> 06:03:19,575 PERSPECTIVES ON CVI. 8300 06:03:19,575 --> 06:03:22,411 ALL THOSE PROVIDERS, THE OT, THE 8301 06:03:22,411 --> 06:03:25,280 TEACHERS, THE DIFFERENT EYE CARE 8302 06:03:25,280 --> 06:03:26,915 PROVIDERS, PEDIATRICIANS, WE 8303 06:03:26,915 --> 06:03:32,220 NEED TO BUILD AWARENESS IN THOSE 8304 06:03:32,220 --> 06:03:34,189 GROUPS, WE THOUGHT ABOUT MAYBE 8305 06:03:34,189 --> 06:03:35,157 HAVING INCREASING CONTINUING 8306 06:03:35,157 --> 06:03:38,160 EDUCATION OPTIONS AND REACHING 8307 06:03:38,160 --> 06:03:39,461 PEOPLE AT THEIR PROFESSIONAL 8308 06:03:39,461 --> 06:03:41,797 SOCIETIES AND CONFERENCES, AND 8309 06:03:41,797 --> 06:03:44,933 ULTIMATELY FOLDING CVI INTO THE 8310 06:03:44,933 --> 06:03:48,637 CURRICULA FOR TV I, TEACHERS OF 8311 06:03:48,637 --> 06:03:53,275 THE VISUALLY IMPAIRED, INTO TO 8312 06:03:53,275 --> 06:03:54,876 PEDIATRICIANS, TO OPTOMETRY AND 8313 06:03:54,876 --> 06:03:55,744 OPHTHALMOLOGY. 8314 06:03:55,744 --> 06:03:56,845 WE'VE HEARD FROM MANY PEOPLE 8315 06:03:56,845 --> 06:03:58,046 THAT IT'S NOT ACTUALLY PART OF 8316 06:03:58,046 --> 06:04:01,216 THE TRAINING THAT YOU RECEIVE 8317 06:04:01,216 --> 06:04:02,651 PROFESSIONALLY. 8318 06:04:02,651 --> 06:04:04,553 SO TO ADVOCATE FOR SOCIETIES TO 8319 06:04:04,553 --> 06:04:08,023 MAKE THAT A PRIORITY. 8320 06:04:08,023 --> 06:04:11,560 AND THEN WHO ELSE NEEDS TO RAISE 8321 06:04:11,560 --> 06:04:12,527 AWARENESS ARE THE FAMILIES AND 8322 06:04:12,527 --> 06:04:12,928 PATIENTS. 8323 06:04:12,928 --> 06:04:18,333 THIS WOULD COME FROM SCREENING. 8324 06:04:18,333 --> 06:04:19,267 IDEALLY WOULD YOU SCREEN -- WE 8325 06:04:19,267 --> 06:04:20,802 DON'T HAVE -- WE IDENTIFIED THAT 8326 06:04:20,802 --> 06:04:22,270 IT'S EASY TO SAY THAT, BUT WE 8327 06:04:22,270 --> 06:04:23,572 DON'T HAVE A VALIDATED SCREEN 8328 06:04:23,572 --> 06:04:28,143 FOR THE APPROPRIATE AGE. 8329 06:04:28,143 --> 06:04:29,811 WE HEARD ABOUT THE AUSTIN 8330 06:04:29,811 --> 06:04:31,313 ASSESSMENT, I THINK THAT STARTED 8331 06:04:31,313 --> 06:04:36,551 AT AGE 8, AND EVEN WAITING UNTIL 8332 06:04:36,551 --> 06:04:38,687 PRE-SCHOOL A LITTLE TOO LATE FOR 8333 06:04:38,687 --> 06:04:40,288 MANY TO PROVIDE THESE KIDS 8334 06:04:40,288 --> 06:04:44,026 ACCESS. 8335 06:04:44,026 --> 06:04:45,560 SO THERE IS A NEED FOR SCREENING 8336 06:04:45,560 --> 06:04:45,927 TOOLS. 8337 06:04:45,927 --> 06:04:47,329 WE DON'T WANT TO LET THE PERFECT 8338 06:04:47,329 --> 06:04:51,700 GET IN THE WAY OF SUCCESS, SO 8339 06:04:51,700 --> 06:04:55,504 THERE'S -- PEOPLE BROUGHT UP 8340 06:04:55,504 --> 06:04:57,706 SCREENING, NICU AND INDIVIDUALS 8341 06:04:57,706 --> 06:05:00,642 DIAGNOSED WITH CEREBRAL PALSY 8342 06:05:00,642 --> 06:05:02,210 FOR COMPLETE VISUAL ASSESSMENTS, 8343 06:05:02,210 --> 06:05:03,311 THESE THINGS HAVE BEEN BROUGHT 8344 06:05:03,311 --> 06:05:05,781 UP TODAY, BUT TO KEEP THAT AS A 8345 06:05:05,781 --> 06:05:10,185 GOAL TO REALLY REACH REACH AS MY 8346 06:05:10,185 --> 06:05:11,053 PEOPLE AS POSSIBLE. 8347 06:05:11,053 --> 06:05:13,021 ANOTHER WAY TO EDUCATE THE -- TO 8348 06:05:13,021 --> 06:05:16,425 BRING AWARENESS AND EDUCATE 8349 06:05:16,425 --> 06:05:17,726 INDIVIDUALS IN THE -- THE 8350 06:05:17,726 --> 06:05:18,393 PROFESSIONALS IN THE COMMUNITY 8351 06:05:18,393 --> 06:05:20,162 IS THROUGH PUBLIC AWARENESS. 8352 06:05:20,162 --> 06:05:22,164 I DO REPRESENT NIH BUT SOMEONE 8353 06:05:22,164 --> 06:05:25,067 ELSE IN OUR GROUP SAID NEI HAS 8354 06:05:25,067 --> 06:05:26,401 GREAT RESOURCES THAT WE PROVIDE 8355 06:05:26,401 --> 06:05:28,136 FOR LOW VISION, LOW VISION 8356 06:05:28,136 --> 06:05:29,538 RESOURCES, AND WE HAVE HEALTHY 8357 06:05:29,538 --> 06:05:31,306 VISION MONTH TO RAISE AWARENESS 8358 06:05:31,306 --> 06:05:35,010 AND THEY SUGGESTED HAVING A 8359 06:05:35,010 --> 06:05:38,747 HEALTHY VISION MONTH FOCUSING ON 8360 06:05:38,747 --> 06:05:42,784 CVI OR A CVI WEEK OR SOMETHING 8361 06:05:42,784 --> 06:05:45,420 TO PROVIDE RESOURCES TO BUILD 8362 06:05:45,420 --> 06:05:47,289 PUBLIC EDUCATION CAMPAIGNS OR 8363 06:05:47,289 --> 06:05:50,692 PSAs, BECAUSE THIS -- WE HEARD 8364 06:05:50,692 --> 06:05:51,993 A LOT TODAY ABOUT FAMILIES NOT 8365 06:05:51,993 --> 06:05:53,528 BEING BELIEVED, AND IT HARD 8366 06:05:53,528 --> 06:05:54,963 TO -- YOU KNOW, IF YOU GET THE 8367 06:05:54,963 --> 06:05:56,198 MESSAGE OUT THERE, THAT WILL 8368 06:05:56,198 --> 06:05:59,000 HELP PROVIDERS START TO BELIEVE 8369 06:05:59,000 --> 06:05:59,901 FAMILIES. 8370 06:05:59,901 --> 06:06:00,969 SO THAT WAS SOMETHING THAT CAME 8371 06:06:00,969 --> 06:06:02,304 ACROSS IN OUR FOCUS GROUP. 8372 06:06:02,304 --> 06:06:05,507 WE DID TALK ABOUT HOW TO USE THE 8373 06:06:05,507 --> 06:06:06,708 REGISTRY, BUT THE LAST THING I 8374 06:06:06,708 --> 06:06:09,111 JUST WANT TO MENTION IS THAT WE 8375 06:06:09,111 --> 06:06:12,380 WOULD LIKE -- ONCE WE PUT UP A 8376 06:06:12,380 --> 06:06:14,015 REGISTRY, WE LIKE FAMILIES TO 8377 06:06:14,015 --> 06:06:16,017 PARTICIPATE AND HOW TO ADVERTISE 8378 06:06:16,017 --> 06:06:19,087 TO DIFFERENT PROVIDERS TO THE 8379 06:06:19,087 --> 06:06:20,288 PROFESSIONAL SOCIETIES AND HOW 8380 06:06:20,288 --> 06:06:21,690 TO GET FAMILIES, WE TRIED TO 8381 06:06:21,690 --> 06:06:23,325 THINK OF WOULD THERE BE BARRIERS 8382 06:06:23,325 --> 06:06:25,127 FOR FAMILIES TO CONSENT TO 8383 06:06:25,127 --> 06:06:25,727 PARTICIPATE, PARTICULARLY TO 8384 06:06:25,727 --> 06:06:29,498 MAKE SURE WE GET DIVERSE SETS 8385 06:06:29,498 --> 06:06:30,866 OF -- DIVERSE PARTICIPANTS IN 8386 06:06:30,866 --> 06:06:33,668 THE REGISTRY. 8387 06:06:33,668 --> 06:06:35,170 SO WE DIDN'T IDENTIFY -- WE 8388 06:06:35,170 --> 06:06:37,539 RECOGNIZE THAT THERE ARE 8389 06:06:37,539 --> 06:06:41,109 STANDARD -- THINKING OF -- THERE 8390 06:06:41,109 --> 06:06:44,713 ARE BARRIERS FOR CERTAIN 8391 06:06:44,713 --> 06:06:46,248 POPULATIONS, BUT WE DIDN'T 8392 06:06:46,248 --> 06:06:49,117 IDENTIFY ANY SOLUTIONS TO THAT 8393 06:06:49,117 --> 06:06:49,451 POINT. 8394 06:06:49,451 --> 06:06:50,986 WHILE I HAVE THE MIC, I WANT TO 8395 06:06:50,986 --> 06:06:53,822 LET YOU KNOW IN THE ROOM THAT WE 8396 06:06:53,822 --> 06:06:56,892 TALKED ABOUT CVI IN THE NEI 8397 06:06:56,892 --> 06:06:57,859 STRATEGIC PLAN, AND I HAVE 8398 06:06:57,859 --> 06:06:59,161 BROUGHT SOME COPIES, THEY'RE ON 8399 06:06:59,161 --> 06:07:00,929 THE TABLE BACK HERE, FOR THOSE 8400 06:07:00,929 --> 06:07:05,066 OF YOU AT HOME, YOU CAN JUST 8401 06:07:05,066 --> 06:07:07,068 GOOGLE NATIONAL EYE INSTITUTE 8402 06:07:07,068 --> 06:07:07,636 STRATEGIC PLAN. 8403 06:07:07,636 --> 06:07:09,171 YOU'LL FIND A LINK TO AN ONLINE 8404 06:07:09,171 --> 06:07:10,238 VERSION OF THIS. 8405 06:07:10,238 --> 06:07:11,873 FOR THOSE OF YOU THAT WANT, YOU 8406 06:07:11,873 --> 06:07:17,345 CAN TAKE HOME THE FULL 157-PAGE 8407 06:07:17,345 --> 06:07:17,779 VERSION. 8408 06:07:17,779 --> 06:07:19,114 IF YOU'RE OVER THE WEIGHT LIMIT, 8409 06:07:19,114 --> 06:07:21,149 THERE'S ALSO AN EXECUTIVE 8410 06:07:21,149 --> 06:07:21,383 SUMMARY. 8411 06:07:21,383 --> 06:07:28,089 [LAUGHTER] 8412 06:07:28,089 --> 06:07:31,993 >> SORRY, SHEFA, WAS THERE 8413 06:07:31,993 --> 06:07:33,395 ANYTHING ELSE YOU WANTED TO SAY? 8414 06:07:33,395 --> 06:07:34,996 >> THIS IS CHERI. 8415 06:07:34,996 --> 06:07:36,698 >> THIS IS CHERI, AND I DIDN'T 8416 06:07:36,698 --> 06:07:38,233 HAVE THE CHANCE TO TELL YOU THAT 8417 06:07:38,233 --> 06:07:41,203 I'M WEARING A GREEN JACKET. 8418 06:07:41,203 --> 06:07:43,171 SOME CALL ME PETITE, AND THE 8419 06:07:43,171 --> 06:07:44,906 ARGUMENT IS ABOUT MY HAIR. 8420 06:07:44,906 --> 06:07:47,409 FOLKS WHO CUT MY HAIR SAY THAT 8421 06:07:47,409 --> 06:07:48,310 IT'S ASH BLOND. 8422 06:07:48,310 --> 06:07:50,512 MY KIDS VACILLATE BETWEEN GREY, 8423 06:07:50,512 --> 06:07:52,781 SILVER, AND WHITE. 8424 06:07:52,781 --> 06:07:54,649 SO I THINK YOU'RE ALL ASH BLOND 8425 06:07:54,649 --> 06:07:56,952 FOLKS. 8426 06:07:56,952 --> 06:08:00,956 I JUST WANT TO THANK YOU FOR AN 8427 06:08:00,956 --> 06:08:02,724 EXHAUSTING BUT TREMENDOUS DAY. 8428 06:08:02,724 --> 06:08:05,694 WE ARE SORRY THAT THERE WAS SO 8429 06:08:05,694 --> 06:08:08,630 MUCH TO DISCUSS AND YOU ALL WERE 8430 06:08:08,630 --> 06:08:12,267 SO IMPASSIONED AND INVOLVED THAT 8431 06:08:12,267 --> 06:08:13,902 WE MAYBE SHOULD HAVE HAD MORE 8432 06:08:13,902 --> 06:08:15,036 BREAKS, BUT THERE WAS JUST TOO 8433 06:08:15,036 --> 06:08:16,638 MUCH TO SAY, AND I THINK WE'RE 8434 06:08:16,638 --> 06:08:17,706 STILL FEELING LIKE WE WANT TO 8435 06:08:17,706 --> 06:08:19,040 HEAR MORE. 8436 06:08:19,040 --> 06:08:22,010 I HOPE YOU ALL HAVE SAFE TRAVELS 8437 06:08:22,010 --> 06:08:22,644 HOME. 8438 06:08:22,644 --> 06:08:24,045 I HOPE YOU MET SOMEONE NEW HERE 8439 06:08:24,045 --> 06:08:27,582 THAT YOU WILL STAY IN TOUCH WI 8440 06:08:27,582 --> 06:08:27,916 WITH. 8441 06:08:27,916 --> 06:08:30,518 THIS WAS JUST A WEALTH OF 8442 06:08:30,518 --> 06:08:32,187 INFORMATION, BUT ALSO JUST 8443 06:08:32,187 --> 06:08:35,357 REALLY HEARTENING TO SEE HOW 8444 06:08:35,357 --> 06:08:38,226 IMPASSIONED YOU ALL ARE. 8445 06:08:38,226 --> 06:08:39,794 AND ACTUALLY MELINDA, I'D LOVE 8446 06:08:39,794 --> 06:08:43,798 FOR YOU TO BE ABLE TO CLICK THE 8447 06:08:43,798 --> 06:08:45,934 GAVEL OR WHATEVER TO END THE 8448 06:08:45,934 --> 06:08:48,169 MEETING. 8449 06:08:48,169 --> 06:08:49,537 >> ALL RIGHT, I HAVE ONE MINUTE, 8450 06:08:49,537 --> 06:08:51,773 WE'RE ACTUALLY ENDING ON TIME. 8451 06:08:51,773 --> 06:08:53,541 THANK YOU SO MUCH FOR BEARING 8452 06:08:53,541 --> 06:08:54,042 WITH US. 8453 06:08:54,042 --> 06:08:55,310 I KNOW IT'S A LITTLE GRUELING, 8454 06:08:55,310 --> 06:08:57,345 THIS IS THE END OF THE WORKSHOP 8455 06:08:57,345 --> 06:08:58,513 BUT JUST THE BEGINNING OF ALL 8456 06:08:58,513 --> 06:08:59,447 OUR WORK. 8457 06:08:59,447 --> 06:09:00,649 WE'RE GOING TO NEED A LOT OF 8458 06:09:00,649 --> 06:09:02,517 INPUT FROM ALL OF YOU, AND ALSO 8459 06:09:02,517 --> 06:09:04,152 JUST DEVELOPING OUR DIAGNOSTIC 8460 06:09:04,152 --> 06:09:05,553 CRITERIA AND DEFINITION. 8461 06:09:05,553 --> 06:09:06,554 SO THANK YOU AGAIN FOR COMING 8462 06:09:06,554 --> 06:09:07,188 OUT HERE. 8463 06:09:07,188 --> 06:09:08,356 WE REALLY APPRECIATE IT. 8464 06:09:08,356 --> 06:09:18,533 [APPLAUSE]