1 00:00:05,400 --> 00:00:10,520 >>WELCOME BACK 2 00:00:10,520 --> 00:00:12,920 TO THE NICHD ADVISORY COUNCIL. 3 00:00:12,920 --> 00:00:17,480 TODAY IS OUR DAY OF REBECCAS. 4 00:00:17,480 --> 00:00:22,520 DON'T GET CONFUSED BETWEEN 5 00:00:22,520 --> 00:00:23,920 REBEKAH AND REBECCA. 6 00:00:23,920 --> 00:00:26,080 WE'RE FIRST GOING TO HEAR FROM 7 00:00:26,080 --> 00:00:27,320 MS. REBECCA ROSEN, DIRECTOR OF 8 00:00:27,320 --> 00:00:28,840 THE NICHD OFFICE OF DATA 9 00:00:28,840 --> 00:00:30,280 SCIENCE, AND SHARING. 10 00:00:30,280 --> 00:00:33,440 SHE WILL START THE OPEN SESSION 11 00:00:33,440 --> 00:00:35,880 OF DAY TWO WITH A PRESENTATION 12 00:00:35,880 --> 00:00:39,480 ON DATA SHARING, WHICH IS WELL 13 00:00:39,480 --> 00:00:41,000 TIMED BECAUSE THE NEW NIH POLICY 14 00:00:41,000 --> 00:00:42,440 ON DATA MANAGEMENT AND SHARING 15 00:00:42,440 --> 00:00:44,320 GOES INTO EFFECT TODAY, AS I 16 00:00:44,320 --> 00:00:46,800 MENTIONED YESTERDAY. 17 00:00:46,800 --> 00:00:47,880 SO I'M GOING TO HAND THE VIRTUAL 18 00:00:47,880 --> 00:00:49,240 MICROPHONE OVER TO DR. REBECCA 19 00:00:49,240 --> 00:00:50,640 ROSEN. 20 00:00:50,640 --> 00:00:52,160 >>THANK YOU, DR. BIANCHI, 21 00:00:52,160 --> 00:00:53,960 AND HAPPY DATA MANAGEMENT AND 22 00:00:53,960 --> 00:00:55,360 SHARING POLICY DAY. 23 00:00:55,360 --> 00:00:59,760 SO I AM GOING TO JUMP RIGHT IN. 24 00:00:59,760 --> 00:01:01,400 TODAY I'M GOING TO TALK ABOUT 25 00:01:01,400 --> 00:01:03,240 THE OFFICE OF DATA SCIENCES 26 00:01:03,240 --> 00:01:03,800 SHARING. 27 00:01:03,800 --> 00:01:05,000 I'LL GIVE AN OVERVIEW OF THE 28 00:01:05,000 --> 00:01:06,560 POLICY FOR DATA MANAGEMENT AND 29 00:01:06,560 --> 00:01:07,640 SHARING, AND THEN I'LL DISCUSS 30 00:01:07,640 --> 00:01:10,160 THE DATA SHARING RESOURCES THAT 31 00:01:10,160 --> 00:01:13,560 WE HAVE BEEN DEVELOPING FOR 32 00:01:13,560 --> 00:01:14,880 NICHD'S STAFF AND INVESTIGATORS. 33 00:01:14,880 --> 00:01:18,080 I'LL START WITH THE OFFICE OF 34 00:01:18,080 --> 00:01:18,880 DATA SCIENCE AND SHARING. 35 00:01:18,880 --> 00:01:22,920 THIS IS A NEW OFFICE, WE WERE 36 00:01:22,920 --> 00:01:24,320 ESTABLISHED UNDER THE NICHD 37 00:01:24,320 --> 00:01:27,560 STRATEGIC PLAN 2020. 38 00:01:27,560 --> 00:01:29,160 SPECIFICALLY THE SCIENTIFIC 39 00:01:29,160 --> 00:01:31,400 SECUREDSHIP GOAL 2, FACILITATING 40 00:01:31,400 --> 00:01:34,160 DATA SHARING AND ACCESS TO 41 00:01:34,160 --> 00:01:34,400 SPECIMENS. 42 00:01:34,400 --> 00:01:36,000 THE OFFICE WAS ESTABLISHED IN 43 00:01:36,000 --> 00:01:37,840 JULY 2021, WHEN I JOINED NICHD 44 00:01:37,840 --> 00:01:39,320 FROM THE NATIONAL INSTITUTE OF 45 00:01:39,320 --> 00:01:42,040 MENTAL HEALTH. 46 00:01:42,040 --> 00:01:45,440 AND IN SEPTEMBER 2021, I HIRED 47 00:01:45,440 --> 00:01:47,280 VALERIE AS MY DEPUTY DIRECTOR 48 00:01:47,280 --> 00:01:48,840 AND AN NIH DATA SCHOLAR. 49 00:01:48,840 --> 00:01:51,480 SINCE THEN, WE'VE HIRED JENNY 50 00:01:51,480 --> 00:01:54,320 YANG, INFORMATICS PROGRAM 51 00:01:54,320 --> 00:01:56,440 MANAGER, ELIZABETH CLERKIN, 52 00:01:56,440 --> 00:01:58,560 PROJECTS MANAGER, STEPHANIE 53 00:01:58,560 --> 00:02:01,000 TYSON, MANAGEMENT FELLOW, AND A 54 00:02:01,000 --> 00:02:01,960 SUPPORT INTEGRATION SPECIALIST. 55 00:02:01,960 --> 00:02:05,960 WE ARE NOW A TEAM OF SEVEN. 56 00:02:05,960 --> 00:02:07,600 WE BRING EXPERTISE IN CLINICAL, 57 00:02:07,600 --> 00:02:09,000 BEHAVIORAL AND BASIC RESEARCH, 58 00:02:09,000 --> 00:02:11,640 DATA MANAGEMENT, DATA SCIENCE 59 00:02:11,640 --> 00:02:13,920 AND DATA VISUALIZATION, CLINICAL 60 00:02:13,920 --> 00:02:15,040 INFORMATICS, SOFTWARE 61 00:02:15,040 --> 00:02:16,000 ENGINEERING, RESEARCH COMPUTING 62 00:02:16,000 --> 00:02:20,920 AND PROJECT MANAGEMENT. 63 00:02:20,920 --> 00:02:22,240 WE HAVE ESTABLISHED A MISSION 64 00:02:22,240 --> 00:02:23,880 AND A VISION FOR THE OFFICE. 65 00:02:23,880 --> 00:02:24,880 OUR VISION IS WE ARE WORKING 66 00:02:24,880 --> 00:02:26,640 TOWARDS A CULTURE OF RESPONSIBLE 67 00:02:26,640 --> 00:02:28,920 AND INNOVATIVE USE OF DATA AND 68 00:02:28,920 --> 00:02:32,640 BIOSPECIMENS THAT ACCELERATES 69 00:02:32,640 --> 00:02:34,280 RESEARCH AND IMPROVES HEALTH FOR 70 00:02:34,280 --> 00:02:34,960 NICHD POPULATIONS. 71 00:02:34,960 --> 00:02:38,080 IN ORDER TO ACHIEVE THAT VISION, 72 00:02:38,080 --> 00:02:40,160 OUR MISSION IS TO DEVELOP A 73 00:02:40,160 --> 00:02:42,000 DIVERSE, SECURE AND 74 00:02:42,000 --> 00:02:43,600 INTEROPERABLE RESEARCH DATA 75 00:02:43,600 --> 00:02:45,120 ECOSYSTEM, AND WE WILL ADVISE ON 76 00:02:45,120 --> 00:02:47,400 BEST PRACTICES FOR DATA 77 00:02:47,400 --> 00:02:48,480 COLLECTION, STANDARDS 78 00:02:48,480 --> 00:02:49,360 MANAGEMENT, SHARING AND USE 79 00:02:49,360 --> 00:02:51,560 ACROSS THE RESEARCH AND FUNDING 80 00:02:51,560 --> 00:02:52,080 LIFECYCLES. 81 00:02:52,080 --> 00:02:53,720 AND EVERYTHING THAT WE DO IS 82 00:02:53,720 --> 00:02:55,840 FOCUSED ON ADVANCING THE MISSION 83 00:02:55,840 --> 00:02:58,080 OF NICHD. 84 00:02:58,080 --> 00:03:02,600 I THINK GENERALLY, IT'S COMMONLY 85 00:03:02,600 --> 00:03:04,800 UNDERSTOOD WHAT ADVISING ON BEST 86 00:03:04,800 --> 00:03:06,520 PRACTICES FOR DATA MAPPAGEMENT 87 00:03:06,520 --> 00:03:08,200 ACROSS A LIFECYCLE MEANS BUT I 88 00:03:08,200 --> 00:03:10,040 OFTEN HERE THE QUESTION, WHAT IS 89 00:03:10,040 --> 00:03:10,760 THIS ECOSYSTEM? 90 00:03:10,760 --> 00:03:13,360 SO WE HAVE DEVELOPED AN 91 00:03:13,360 --> 00:03:14,200 ECOSYSTEM INFOGRAPHIC HERE ON 92 00:03:14,200 --> 00:03:15,600 THE RIGHT WHICH IDENTIFIES THE 93 00:03:15,600 --> 00:03:16,840 CORE COMPONENTS OF OUR NICHD 94 00:03:16,840 --> 00:03:18,520 ECOSYSTEM. 95 00:03:18,520 --> 00:03:19,920 IT'S PEOPLE, PROCESSES, DATA, 96 00:03:19,920 --> 00:03:22,560 AND TECHNOLOGIES, AND IT REALLY 97 00:03:22,560 --> 00:03:24,000 EMPHASIZES THE INCLUSIVENESS OF 98 00:03:24,000 --> 00:03:28,360 THE PEOPLE WHO ENGAGE WITH OUR 99 00:03:28,360 --> 00:03:28,640 ECOSYSTEM. 100 00:03:28,640 --> 00:03:30,320 IT RESEARCHERS, CLINICIANS, 101 00:03:30,320 --> 00:03:31,640 STAFF, AND RESEARCH PARTICIPANTS 102 00:03:31,640 --> 00:03:36,800 AND THEIR FAMILIES. 103 00:03:36,800 --> 00:03:42,160 THE ECOSYSTEM IS COMPRISED OF 104 00:03:42,160 --> 00:03:43,920 THESE AND HOW THEY CONNECT 105 00:03:43,920 --> 00:03:45,320 SHOULD BE BASED ON OUR 106 00:03:45,320 --> 00:03:46,520 COMMUNITY'S DATA SCIENCE AND 107 00:03:46,520 --> 00:03:48,160 DATA SHARING MEANS, SPECIFICALLY 108 00:03:48,160 --> 00:03:52,640 WE HAVE THESE HIGH PRIORITY USE 109 00:03:52,640 --> 00:03:54,200 CASES DRIVING THE DEVELOP M OF 110 00:03:54,200 --> 00:03:56,240 THE COMPONENTS OF THE ECOSYSTEM 111 00:03:56,240 --> 00:03:57,680 AND THE CONNECTIVITY OF THOSE 112 00:03:57,680 --> 00:03:58,240 COMPONENTS. 113 00:03:58,240 --> 00:03:59,880 OUR INTRAMURAL AND EXTRAMURAL 114 00:03:59,880 --> 00:04:00,880 INVESTIGATORS NEED TO BE ABLE TO 115 00:04:00,880 --> 00:04:02,480 SHARE THEIR DATA AND 116 00:04:02,480 --> 00:04:04,360 BIOSPECIMENS TO ENCOURAGE 117 00:04:04,360 --> 00:04:05,160 REPRODUCIBILITY AND BROAD 118 00:04:05,160 --> 00:04:05,720 RE-USE. 119 00:04:05,720 --> 00:04:07,360 THE BROAD RESEARCHER COMMUNITY 120 00:04:07,360 --> 00:04:09,080 NEEDS TO BE ABLE TO FIND AND USE 121 00:04:09,080 --> 00:04:10,640 OUR DATA AND SPECIMENS TO ENABLE 122 00:04:10,640 --> 00:04:14,840 NEW AND INNOVATIVE RESEARCH, AND 123 00:04:14,840 --> 00:04:16,360 THEY NEED TO BE ABLE TO ANALYZE 124 00:04:16,360 --> 00:04:19,640 OUR DATA AND USE NEW TOOLS, 125 00:04:19,640 --> 00:04:20,640 TRAININGS AND COMPUTE IN THE 126 00:04:20,640 --> 00:04:22,040 CLOUD IDEALLY. 127 00:04:22,040 --> 00:04:22,720 PARTICIPANT COMEUBTS SHOULD BE 128 00:04:22,720 --> 00:04:24,320 ABLE TO VISUALIZE OUTCOMES OF 129 00:04:24,320 --> 00:04:25,760 THEIR PARTICIPATION IN RESEARCH, 130 00:04:25,760 --> 00:04:27,080 AND ULTIMATELY BENEFIT FASTER 131 00:04:27,080 --> 00:04:30,600 FROM NEW DISCOVERIES. 132 00:04:30,600 --> 00:04:31,920 OUR STAFF HAS A NEED TO TRACK 133 00:04:31,920 --> 00:04:33,760 COMPLIANCE WITH NIH POLICIES AND 134 00:04:33,760 --> 00:04:35,000 ALSO UNDERSTAND GOOD STEWARDSHIP 135 00:04:35,000 --> 00:04:36,400 OF GOVERNMENT FUNDS. 136 00:04:36,400 --> 00:04:38,600 AND NICHD LEADERSHIP NEEDS TO BE 137 00:04:38,600 --> 00:04:42,400 ABLE TO ASSESS AND VISUALIZE THE 138 00:04:42,400 --> 00:04:44,040 SCIENTIFIC RETURN ON OUR 139 00:04:44,040 --> 00:04:48,000 INVESTMINVESTMENTS IN DATA AND 140 00:04:48,000 --> 00:04:52,480 BIOSPECIMEN TESTING. 141 00:04:52,480 --> 00:04:53,560 EXTRAMURAL, INTRAMURAL AND 142 00:04:53,560 --> 00:04:56,000 ADMINISTRATIVE STAFF. 143 00:04:56,000 --> 00:04:58,280 WE DO THIS BY WORKING ON THREE 144 00:04:58,280 --> 00:04:59,480 STRATEGIC OBJECTIVES: TECHNICAL 145 00:04:59,480 --> 00:05:00,800 INFRASTRUCTURE, WHERE WE ARE 146 00:05:00,800 --> 00:05:02,440 DEVELOPING OUT THAT ECOSYSTEM I 147 00:05:02,440 --> 00:05:04,280 JUST DESCRIBED, POLICY 148 00:05:04,280 --> 00:05:05,480 IMPLEMENTATION AND COMPLIANCE, 149 00:05:05,480 --> 00:05:09,120 WHERE WE ARE CREATING NICHD-WIDE 150 00:05:09,120 --> 00:05:10,480 GUIDANCE AND IMPLEMENTATION 151 00:05:10,480 --> 00:05:12,720 RESOURCE FOR ALL NIH DATA AND 152 00:05:12,720 --> 00:05:14,400 SPECIMEN SHARING POLICIES, AND 153 00:05:14,400 --> 00:05:16,120 STANDARDS, TRAININGS AND 154 00:05:16,120 --> 00:05:17,200 PARTNERSHIPS, WHERE WE ARE 155 00:05:17,200 --> 00:05:18,440 BUILDING OUT INFORMATIONAL 156 00:05:18,440 --> 00:05:23,360 RESOURCES AND TOOLS ON DATA 157 00:05:23,360 --> 00:05:24,960 SYSTEMS STANDARDS, ON TRAINING 158 00:05:24,960 --> 00:05:26,440 ON DATA SCIENCE AND DATA SHARING 159 00:05:26,440 --> 00:05:29,280 AND WE ARE DEVELOPING STRATEGIC 160 00:05:29,280 --> 00:05:30,280 PARTNERSHIPS WITHIN NICHD, 161 00:05:30,280 --> 00:05:32,400 ACROSS NIH, AT THE DEPARTMENT 162 00:05:32,400 --> 00:05:34,320 LEVEL AND BEYOND TO SUPPORT THE 163 00:05:34,320 --> 00:05:36,480 ACTIVITIES ACROSS TECHNICAL 164 00:05:36,480 --> 00:05:37,920 INFRASTRUCTURE, POLICY, 165 00:05:37,920 --> 00:05:41,840 IMPLEMENTATION AND COMPLIANCE. 166 00:05:41,840 --> 00:05:44,040 I WANT TO EMPHASIZE, DATA 167 00:05:44,040 --> 00:05:45,560 SCIENCE AND DATA SHARING DID NOT 168 00:05:45,560 --> 00:05:46,600 START AT NICHD WHEN OUR OFFICE 169 00:05:46,600 --> 00:05:47,760 IS ESTABLISHED. 170 00:05:47,760 --> 00:05:49,080 THESE ACTIVITIES HAS BEEN A PART 171 00:05:49,080 --> 00:05:51,040 OF THE NICHD RESEARCH FABRIC FOR 172 00:05:51,040 --> 00:05:51,600 MANY YEARS. 173 00:05:51,600 --> 00:05:53,560 SO WHEN WE FIRST ESTABLISHED THE 174 00:05:53,560 --> 00:05:58,280 OFFICE, WE MET WITH NICHD 175 00:05:58,280 --> 00:05:59,400 EXTRAMURAL AND INTRAMURAL STAFF 176 00:05:59,400 --> 00:06:00,640 TO LEARN ABOUT THEIR DATA 177 00:06:00,640 --> 00:06:01,680 SCIENCE AND SHARING ACTIVITIES 178 00:06:01,680 --> 00:06:02,840 AND WHAT THEY NEEDED FROM OUR 179 00:06:02,840 --> 00:06:03,440 NEW OFFICE. 180 00:06:03,440 --> 00:06:07,000 THIS HELPED US TO ESTABLISH A 181 00:06:07,000 --> 00:06:08,240 GOVERNANCE STRUCTURE WITHIN 182 00:06:08,240 --> 00:06:11,000 NICHD TO ENSURE THAT ODSS IS 183 00:06:11,000 --> 00:06:13,520 APPROPRIATELY LEVERAGING OUR 184 00:06:13,520 --> 00:06:14,680 DIVERSE STAFF EXPERTISE AND 185 00:06:14,680 --> 00:06:16,440 MEETING THEIR NEEDS IN THE DATA 186 00:06:16,440 --> 00:06:17,320 SCIENCE AND SHARING SPACE. 187 00:06:17,320 --> 00:06:19,120 AS YOU CAN SEE, OUR GOVERNANCE 188 00:06:19,120 --> 00:06:21,480 STRUCTURE MAPS TO OUR STRATEGIC 189 00:06:21,480 --> 00:06:22,360 OBJECTIVES, AND WE CURRENTLY 190 00:06:22,360 --> 00:06:27,160 HAVE ADVISORY GROUPS VIA OUR 191 00:06:27,160 --> 00:06:28,560 TECHNICAL INFRASTRUCTURE, POLICY 192 00:06:28,560 --> 00:06:29,440 IMPLEMCATION AND COMPLIANCE 193 00:06:29,440 --> 00:06:29,760 ACTIVITIES. 194 00:06:29,760 --> 00:06:31,760 ON THE TECHNICAL INFRASTRUCTURE 195 00:06:31,760 --> 00:06:33,960 SIDE, WE ESTABLISHED A DATA AND 196 00:06:33,960 --> 00:06:34,840 SPECIMEN ECOSYSTEM WORKING GROUP 197 00:06:34,840 --> 00:06:37,400 IN JANUARY OF LAST YEAR. 198 00:06:37,400 --> 00:06:38,800 THE GROUP IS CHARGED TO DEFINE 199 00:06:38,800 --> 00:06:40,800 THE SCOPE OF OUR NICHD RESEARCH 200 00:06:40,800 --> 00:06:43,040 DATA AND SPECIMEN ECOSYSTEM, AND 201 00:06:43,040 --> 00:06:44,680 ONCE IT'S DEFINED, TELL US WHAT 202 00:06:44,680 --> 00:06:46,880 IT LOOKS LIKE, DEFINE THE 203 00:06:46,880 --> 00:06:47,880 EXPECTATIONS FOR THE ECOSYSTEM 204 00:06:47,880 --> 00:06:49,400 AND THE TIMELINE FOR BUILDING 205 00:06:49,400 --> 00:06:53,680 OUT THE SYSTEM THROUGH 206 00:06:53,680 --> 00:06:54,760 MEMBERSHIP THROUGH THEIR SUBJECT 207 00:06:54,760 --> 00:06:56,080 MATTER EXPERTISE, AND THEY WILL 208 00:06:56,080 --> 00:06:58,040 ALSO GUIDE US IN OUR ENGAGEMENT 209 00:06:58,040 --> 00:07:00,200 WITH OTHER NICHD STAFF AND THE 210 00:07:00,200 --> 00:07:01,640 BROADER RESEARCH COMMUNITY. 211 00:07:01,640 --> 00:07:03,600 I'M NOT GOING TO READ THROUGH 212 00:07:03,600 --> 00:07:05,040 EVERY NAME ON HERE, BUT I WILL 213 00:07:05,040 --> 00:07:07,240 EMPHASIZE THAT WE HAVE BROAD 214 00:07:07,240 --> 00:07:08,800 REPRESENTATION ACROSS NICHD ON 215 00:07:08,800 --> 00:07:09,320 THIS GROUP. 216 00:07:09,320 --> 00:07:11,200 WE HAVE FOUR STAFF FROM OUR 217 00:07:11,200 --> 00:07:12,320 INTRAMURAL RESEARCH DIVISION, 218 00:07:12,320 --> 00:07:13,800 AND WE HAVE A REPRESENTATIVE 219 00:07:13,800 --> 00:07:16,120 FROM EVERY SCIENTIFIC EXTRAMURAL 220 00:07:16,120 --> 00:07:17,640 PROGRAM BRANCH AND THE NATIONAL 221 00:07:17,640 --> 00:07:19,200 CENTER FOR MEDICAL 222 00:07:19,200 --> 00:07:21,480 REHABILITATION AND RESEARCH. 223 00:07:21,480 --> 00:07:25,880 ON THE DATA -- ON THE POLICY AND 224 00:07:25,880 --> 00:07:27,280 IMPLEMENTATION SIDE, WE HAVE AN 225 00:07:27,280 --> 00:07:28,160 EXTRAMURAL DATA SHARING 226 00:07:28,160 --> 00:07:28,600 COMMITTEE. 227 00:07:28,600 --> 00:07:31,680 THIS COMMITTEE PRECEDED OUR 228 00:07:31,680 --> 00:07:32,560 OFFICE, IT WAS ESTABLISHED IN 229 00:07:32,560 --> 00:07:33,320 2018. 230 00:07:33,320 --> 00:07:38,360 IT'S CURRENTLY LED BY OUR OFFICE 231 00:07:38,360 --> 00:07:44,040 AND REBEKAH RASOOLY. 232 00:07:44,040 --> 00:07:45,920 IT COLLECTIVELY DEFINES POLICY 233 00:07:45,920 --> 00:07:47,120 IMPLEMENTATION STRATEGIES AND IT 234 00:07:47,120 --> 00:07:48,080 INFORMS THE DEVELOPMENT OF 235 00:07:48,080 --> 00:07:49,640 RESOURCES FOR NIH DATA SHARING 236 00:07:49,640 --> 00:07:49,960 POLICIES. 237 00:07:49,960 --> 00:07:51,680 THE MEMBERSHIP ON THIS DATA 238 00:07:51,680 --> 00:07:52,880 SHARING COMMITTEE IS INCREDIBLY 239 00:07:52,880 --> 00:07:53,240 BROAD. 240 00:07:53,240 --> 00:07:56,200 IT COVERS OUR 12 EXTRAMURAL 241 00:07:56,200 --> 00:07:58,080 SCIENTIFIC BRANCHES AND NCMRR. 242 00:07:58,080 --> 00:08:00,480 ALSO WE HAVE REPRESENTATION FROM 243 00:08:00,480 --> 00:08:05,200 OUR DEA BRANCHES, OSPRA, AND 244 00:08:05,200 --> 00:08:05,520 INTRAMURAL. 245 00:08:05,520 --> 00:08:07,880 I NAMED HERE EACH OF THE PRIMARY 246 00:08:07,880 --> 00:08:08,920 MEMBERS IN THE DATA SHARING 247 00:08:08,920 --> 00:08:09,360 COMMITTEE. 248 00:08:09,360 --> 00:08:10,840 I WILL POINT OUT THAT EACH OF 249 00:08:10,840 --> 00:08:12,280 THESE HAS AN ALTERNATE MEMBER AS 250 00:08:12,280 --> 00:08:14,240 WELL, SO IT'S AN INCREDIBLY 251 00:08:14,240 --> 00:08:15,200 ACTIVE MEETING. 252 00:08:15,200 --> 00:08:20,600 WE MEET TWICE A MONTH. 253 00:08:20,600 --> 00:08:21,600 WE ALSO ESTABLISHED JANUARY OF 254 00:08:21,600 --> 00:08:23,360 LAST YEAR AN INTRAMURAL DATA 255 00:08:23,360 --> 00:08:24,240 SHARING COMMITTEE. 256 00:08:24,240 --> 00:08:25,880 BECAUSE THE INTRAMURAL RESEARCH 257 00:08:25,880 --> 00:08:26,960 COMMUNITY DOES HAVE SPECIFIC 258 00:08:26,960 --> 00:08:28,080 NEEDS WHEN IT COMES TO 259 00:08:28,080 --> 00:08:31,120 IMPLEMENTING THE POLICY, THE 260 00:08:31,120 --> 00:08:32,880 CHARGE OF THIS COMMITTEE IS TO 261 00:08:32,880 --> 00:08:34,520 DEFINED THE NICHD INTRAMURAL 262 00:08:34,520 --> 00:08:35,920 IMPLEMENTATION OF DATA SHARING 263 00:08:35,920 --> 00:08:37,760 POLICIES, AND TO IDENTIFY AND 264 00:08:37,760 --> 00:08:39,640 PRIORITIZE THE RESOURCES THAT 265 00:08:39,640 --> 00:08:41,160 ODSS WILL DEVELOP TO FACILITATE 266 00:08:41,160 --> 00:08:43,160 THEIR RESEARCHERS' ABILITY TO 267 00:08:43,160 --> 00:08:44,360 COMPLY WITH DATA SHARING 268 00:08:44,360 --> 00:08:45,960 POLICIES. 269 00:08:45,960 --> 00:08:47,560 THE REPRESENTATION ON THIS GROUP 270 00:08:47,560 --> 00:08:48,440 IS ALSO BROAD. 271 00:08:48,440 --> 00:08:50,440 IT COVERS CLINICAL, POPULATION 272 00:08:50,440 --> 00:08:51,800 HEALTH RESEARCH, AND BASIC 273 00:08:51,800 --> 00:08:56,480 SCIENCE. 274 00:08:56,480 --> 00:08:58,360 AND I DO WANT TO THANK EVERYBODY 275 00:08:58,360 --> 00:08:59,560 ON THESE GROUPS. 276 00:08:59,560 --> 00:09:02,080 I APOLOGIZE FOR NOT NAMING THEM 277 00:09:02,080 --> 00:09:05,920 BUT ALL OF THE SLIDES ARE 278 00:09:05,920 --> 00:09:06,600 PUBLICLY AVAILABLE. 279 00:09:06,600 --> 00:09:17,120 I'LL NOW PIVOT TO DATA SHARING 280 00:09:18,880 --> 00:09:19,920 RESOURCES FOR NICHD STAFF AND 281 00:09:19,920 --> 00:09:20,560 INVESTIGATORS. 282 00:09:20,560 --> 00:09:23,000 THE POLICY HAS TWO REQUIREMENTS. 283 00:09:23,000 --> 00:09:28,040 A NUMBER OF EXPECTATIONS AND 284 00:09:28,040 --> 00:09:28,600 DEFINITIONS. 285 00:09:28,600 --> 00:09:29,800 THE REQUIREMENT FIRST IS THAT 286 00:09:29,800 --> 00:09:31,000 RESEARCHERS MUST PROSPECTIVELY 287 00:09:31,000 --> 00:09:34,280 PLAN FOR HOW SCIENTIFIC DATA AND 288 00:09:34,280 --> 00:09:35,480 METADATA WILL BE BOTH MANAGED 289 00:09:35,480 --> 00:09:39,760 AND SHARED. 290 00:09:39,760 --> 00:09:41,320 SCIENTIFIC DATA IS DEFINED, TWO 291 00:09:41,320 --> 00:09:42,280 IMPORTANT DEFINITIONS IN THE 292 00:09:42,280 --> 00:09:43,920 YELLOW BOX, AS THE RECORDED 293 00:09:43,920 --> 00:09:44,800 FACTUAL MATERIAL COMMONLY 294 00:09:44,800 --> 00:09:45,520 ACCEPTED IN THE SCIENTIFIC 295 00:09:45,520 --> 00:09:47,120 COMMUNITY AS SUFFICIENT QUALITY 296 00:09:47,120 --> 00:09:48,520 TO VALIDATE AND REPLICATE 297 00:09:48,520 --> 00:09:50,760 RESEARCH FINDINGS, REGARDLESS OF 298 00:09:50,760 --> 00:09:52,680 WHETHER THOSE DATA ARE USED TO 299 00:09:52,680 --> 00:09:54,440 SUPPORT SCHOLARLY PUBLICATIONS. 300 00:09:54,440 --> 00:09:58,720 SO RESEARCHERS ARE REQUIRED TO 301 00:09:58,720 --> 00:10:02,120 PLAN FOR HOW THOSE DATA AND 302 00:10:02,120 --> 00:10:06,680 METADATA ARE SHARED AND THAT 303 00:10:06,680 --> 00:10:08,160 PLAN SHOULD ALSO CONSIDER ANY 304 00:10:08,160 --> 00:10:09,680 POTENTIAL RESTRICTIONS FOR 305 00:10:09,680 --> 00:10:14,360 LIMITATIONS TO DATA SHARING. 306 00:10:14,360 --> 00:10:15,920 IN THAT PLAN, RESEARCHERS ARE 307 00:10:15,920 --> 00:10:17,480 EXPECTED TO MAXIMIZE DATA 308 00:10:17,480 --> 00:10:18,960 SHARING, AND THE POLICY HAS 309 00:10:18,960 --> 00:10:20,520 DEFINED DATA SHARING AS THE ACT 310 00:10:20,520 --> 00:10:22,720 OF MAKING SCIENTIFIC DATA 311 00:10:22,720 --> 00:10:24,360 AVAILABLE FOR USE BY OTHERS. 312 00:10:24,360 --> 00:10:27,600 FOR EXAMPLE, THE LARGER RESEARCH 313 00:10:27,600 --> 00:10:29,280 COMMUNITY, INSTITUTIONS, AND KEY 314 00:10:29,280 --> 00:10:30,720 HERE IS THE BROADER PUBLIC. 315 00:10:30,720 --> 00:10:32,800 FOR EXAMPLE, VIA AN ESTABLISHED 316 00:10:32,800 --> 00:10:35,480 REPOSITORY. 317 00:10:35,480 --> 00:10:40,200 SO RESEARCHERS ARE EXPECTED TO 318 00:10:40,200 --> 00:10:41,880 SHARE DATA IN REPOSITORIES AND 319 00:10:41,880 --> 00:10:43,080 THE TIME LINES ARE VERY CLEAR, 320 00:10:43,080 --> 00:10:44,080 AT THE TIME OF PUBLICATION OR 321 00:10:44,080 --> 00:10:45,920 END OF A PERFORMANCE PERIOD, 322 00:10:45,920 --> 00:10:46,680 WHICHEVER COMES FIRST. 323 00:10:46,680 --> 00:10:49,640 AND THE SECOND REQUIREMENT IS 324 00:10:49,640 --> 00:10:49,960 COMPLIANCE. 325 00:10:49,960 --> 00:10:52,360 ONCE A PLAN IS APPROVED, 326 00:10:52,360 --> 00:10:53,600 RESEARCHERS ARE REQUIRED TO 327 00:10:53,600 --> 00:10:55,040 COMPLY WITH THAT APPROVED PLAN 328 00:10:55,040 --> 00:10:57,040 AND FOR EXTRAMURAL RESEARCHERS, 329 00:10:57,040 --> 00:10:58,400 IT BECOMES A TERM AND CONDITION 330 00:10:58,400 --> 00:11:01,920 OF AWARD. 331 00:11:01,920 --> 00:11:05,840 NAD TO IN ADDITION TO THE MAIN Y 332 00:11:05,840 --> 00:11:08,840 OF THE OFFICE, WE HAVE 333 00:11:08,840 --> 00:11:10,280 SUPPLEMENTAL GUIDE NOTICES AND 334 00:11:10,280 --> 00:11:11,360 ONE OUTLINES THE ELEMENTS TO 335 00:11:11,360 --> 00:11:12,960 INCLUDE IN A DATA MANAGEMENT AND 336 00:11:12,960 --> 00:11:13,400 SHARING PLAN. 337 00:11:13,400 --> 00:11:15,080 IN GENERAL, PLANS SHOULD BE TWO 338 00:11:15,080 --> 00:11:17,120 PAGES IN LENGTH, BUT THERE IS NO 339 00:11:17,120 --> 00:11:19,640 HARD LIMIT DEFINED. 340 00:11:19,640 --> 00:11:21,080 PLANS SHOULD INCLUDE ALL ASPECTS 341 00:11:21,080 --> 00:11:23,040 OF DATA MANAGEMENT AND SHARING 342 00:11:23,040 --> 00:11:24,520 TO COMPLY WITH BOTH DATA 343 00:11:24,520 --> 00:11:25,800 MANAGEMENT AND SHARING POLICY 344 00:11:25,800 --> 00:11:28,160 AND THE NIH GENOMIC DATA 345 00:11:28,160 --> 00:11:29,800 SHARING POLICY IF IT'S 346 00:11:29,800 --> 00:11:31,360 APPLICABLE. 347 00:11:31,360 --> 00:11:32,320 THE OFFICE OF SCIENCE POLICY AND 348 00:11:32,320 --> 00:11:35,200 EXTRAMURAL RESEARCH OFFICES, 349 00:11:35,200 --> 00:11:36,600 THEY HAVE MADE AVAILABLE AN 350 00:11:36,600 --> 00:11:38,320 OPTIONAL FORMAT PAGE FOR DATA 351 00:11:38,320 --> 00:11:39,400 MANAGEMENT AND SHARING PLANS. 352 00:11:39,400 --> 00:11:42,640 IT'S ON THE SHARES.NIH.GOV 353 00:11:42,640 --> 00:11:43,840 WEBSITE AND THERE ARE OTHER 354 00:11:43,840 --> 00:11:44,240 TEMPLATES AVAILABLE. 355 00:11:44,240 --> 00:11:47,040 THESE ARE OPTIONAL. 356 00:11:47,040 --> 00:11:49,120 THE PLANS SHOULD INCLUDE THESE 357 00:11:49,120 --> 00:11:51,320 SIX ELEMENTS: DATA TYPES AND 358 00:11:51,320 --> 00:11:52,720 RESEARCHERS SHOULD BRIEFLY 359 00:11:52,720 --> 00:11:53,920 DESCRIBE THE DATA, SCIENTIFIC 360 00:11:53,920 --> 00:11:55,720 DATA THAT WILL BE MANAGED AND OF 361 00:11:55,720 --> 00:11:56,920 THOSE DATA THAT WILL BE MANAGED, 362 00:11:56,920 --> 00:11:59,960 WHICH OF THEM WILL BE SHARED, 363 00:11:59,960 --> 00:12:01,320 AND ANY RATIONALE FOR WHY NOT 364 00:12:01,320 --> 00:12:03,960 ALL THE DATA WILL BE SHARED. 365 00:12:03,960 --> 00:12:06,160 THE RESEARCHERS ELEMENT TWO 366 00:12:06,160 --> 00:12:08,160 SHOULD DESCRIBE TOOLS, SOFTWARE 367 00:12:08,160 --> 00:12:08,880 AND/OR CODE SPECIFICALLY THAT 368 00:12:08,880 --> 00:12:11,320 ARE NEEDED TO ACCESS OR 369 00:12:11,320 --> 00:12:12,400 MANIPULATE SHARED SCIENTIFIC 370 00:12:12,400 --> 00:12:14,120 DATA TO SUPPORT REPLICATION OR 371 00:12:14,120 --> 00:12:16,240 RE-USE. 372 00:12:16,240 --> 00:12:17,720 ELEMENT THREE IS STANDARDS. 373 00:12:17,720 --> 00:12:18,800 WHICH STANDARDS WILL BE APPLIED 374 00:12:18,800 --> 00:12:20,760 TO THE SCIENTIFIC DATA AND 375 00:12:20,760 --> 00:12:22,160 ASSOCIATED METADATA IF THEY 376 00:12:22,160 --> 00:12:24,680 EXIST. 377 00:12:24,680 --> 00:12:26,240 ELEMENT 4 ON DATA PRESERVATION 378 00:12:26,240 --> 00:12:29,160 ACCESS AND ASSOCIATED TIME 379 00:12:29,160 --> 00:12:31,040 LINES, THIS IS WHERE RESEARCHERS 380 00:12:31,040 --> 00:12:33,440 SHOULD NAME THE REPOSITORY OR 381 00:12:33,440 --> 00:12:34,320 DATA REPOSITORIES WHERE DATA 382 00:12:34,320 --> 00:12:35,320 WILL BE SHARED. 383 00:12:35,320 --> 00:12:37,360 THEY SHOULD INDICATE HOW THE 384 00:12:37,360 --> 00:12:38,720 SCIENTIFIC DATA WILL BE FINDABLE 385 00:12:38,720 --> 00:12:40,080 BY THE BROAD RESCHER COMMUNITY, 386 00:12:40,080 --> 00:12:41,400 AND WHEN THE SCIENTIFIC DATA 387 00:12:41,400 --> 00:12:42,320 WILL BE MADE AVAILABLE FOR 388 00:12:42,320 --> 00:12:46,200 OTHERS TO USE AND FOR OH HOW HO. 389 00:12:46,200 --> 00:12:47,680 ELEMENT FIVE IS MORE SPECIFIC TO 390 00:12:47,680 --> 00:12:48,800 RESEARCHERS WHO ARE WORKING WITH 391 00:12:48,800 --> 00:12:49,440 HUMAN DATA. 392 00:12:49,440 --> 00:12:52,640 AND THIS IS ACCESS DISTRIBUTION 393 00:12:52,640 --> 00:12:53,240 OR RE-USE CONSIDERATIONS. 394 00:12:53,240 --> 00:12:55,480 IN THIS ELEMENT, RESEARCHERS 395 00:12:55,480 --> 00:12:56,760 SHOULD DESCRIBE APPLICABLE 396 00:12:56,760 --> 00:12:59,280 FACTORS THAT MIGHT EFFECT 397 00:12:59,280 --> 00:13:00,880 SUBSEQUENT ACCESS, DISTRIBUTION 398 00:13:00,880 --> 00:13:02,320 OR RE-USE OF SCIENTIFIC DATA. 399 00:13:02,320 --> 00:13:04,120 THIS COULD BE, FOR EXAMPLE, 400 00:13:04,120 --> 00:13:05,520 LIMITATIONS IMPOSED BY INFORMED 401 00:13:05,520 --> 00:13:06,960 CONSENT POLICIES OR OTHER 402 00:13:06,960 --> 00:13:08,320 REGULATIONS. 403 00:13:08,320 --> 00:13:09,920 ALSO IN THIS ELEMENT, 404 00:13:09,920 --> 00:13:13,000 RESEARCHERS SHOULD DESCRIBE HOW 405 00:13:13,000 --> 00:13:14,120 THEY WILL EMPLOY PRIVACY 406 00:13:14,120 --> 00:13:15,200 PROTECTIONS WHEN SHARING HUMAN 407 00:13:15,200 --> 00:13:15,520 DATA. 408 00:13:15,520 --> 00:13:16,720 AND THIS COULD INCLUDE BUT IT'S 409 00:13:16,720 --> 00:13:18,880 NOT LIMITED TO DEIDENTIFICATION 410 00:13:18,880 --> 00:13:20,760 PROTOCOLS, CERTIFICATED OF 411 00:13:20,760 --> 00:13:21,840 CONFIDENTIALITY, AND SHARING 412 00:13:21,840 --> 00:13:26,040 WITH ACCESS CONTROLS. 413 00:13:26,040 --> 00:13:26,880 FINALLY, ELEMENT SIX IS 414 00:13:26,880 --> 00:13:28,520 OVERSIGHT OF DATA MANAGEMENT AND 415 00:13:28,520 --> 00:13:29,960 SHARING, AND IN THIS ELEMENT, 416 00:13:29,960 --> 00:13:31,280 RESEARCHERS SHOULD DESCRIBE HOW 417 00:13:31,280 --> 00:13:33,120 COMPLIANCE WITH THE PLAN WILL BE 418 00:13:33,120 --> 00:13:34,560 MONITORED AND MANAGED, THE 419 00:13:34,560 --> 00:13:35,960 FREQUENCY OF OVERSIGHT AND BY 420 00:13:35,960 --> 00:13:38,520 WHO. 421 00:13:38,520 --> 00:13:39,800 RESEARCHERS ARE EXPECTED TO 422 00:13:39,800 --> 00:13:41,280 BUDGET FOR DATA MANAGEMENT AND 423 00:13:41,280 --> 00:13:43,640 SHARING COSTS. 424 00:13:43,640 --> 00:13:45,120 IN ANOTHER GUIDE NOTICE 425 00:13:45,120 --> 00:13:46,040 PUBLISHED BY THE OFFICE OF 426 00:13:46,040 --> 00:13:47,480 SCIENCE POLICY, THE 427 00:13:47,480 --> 00:13:48,800 IMPLEMENTATION DETAILS ARE 428 00:13:48,800 --> 00:13:52,640 DESCRIBED AS WELL AS ALLOWABLE 429 00:13:52,640 --> 00:13:52,840 COSTS. 430 00:13:52,840 --> 00:13:55,640 THE COSTS THAT ARE REQUESTED, 431 00:13:55,640 --> 00:13:57,200 DIRECT COSTS, SHOULD BE INCLUDED 432 00:13:57,200 --> 00:13:58,160 IN THE BUDGET FORM AND THEY 433 00:13:58,160 --> 00:14:00,240 SHOULD BE INDICATED AS DAW TA 434 00:14:00,240 --> 00:14:01,080 MANAGEMENT SHARING COSTS. 435 00:14:01,080 --> 00:14:02,520 IN THE BUDGET JUSTIFICATION OF 436 00:14:02,520 --> 00:14:03,680 AN APPLICATION, RESEARCHERS 437 00:14:03,680 --> 00:14:07,440 SHOULD WRITE UP A BRIEF SUMMARY 438 00:14:07,440 --> 00:14:09,080 OF THEIR DMS PLAN AND A 439 00:14:09,080 --> 00:14:10,280 DESCRIPTION OF THE COST THEY ARE 440 00:14:10,280 --> 00:14:11,920 REQUESTING BY CATEGORY OF 441 00:14:11,920 --> 00:14:12,480 ALLOWABLE COSTS. 442 00:14:12,480 --> 00:14:14,560 AND THERE ARE THREE CATEGORIES 443 00:14:14,560 --> 00:14:15,960 OF ALLOWABLE COSTS. 444 00:14:15,960 --> 00:14:18,160 THE FIRST IS CURATING DATA AND 445 00:14:18,160 --> 00:14:19,280 DEVELOPING THE SUPPORTING 446 00:14:19,280 --> 00:14:19,600 DOCUMENTATION. 447 00:14:19,600 --> 00:14:20,880 THIS IS MOST COMMON AND IT 448 00:14:20,880 --> 00:14:23,400 USUALLY BEARS OUT AS PERSONNEL 449 00:14:23,400 --> 00:14:24,600 COSTS. 450 00:14:24,600 --> 00:14:26,360 THE OTHER TWO ALLOWABLE COST 451 00:14:26,360 --> 00:14:27,200 CATEGORIES ARE LESS COMMON. 452 00:14:27,200 --> 00:14:29,000 THESE ARE PRESERVING AND SHARING 453 00:14:29,000 --> 00:14:30,960 DATA THROUGH REPOSITORIES, AND 454 00:14:30,960 --> 00:14:32,040 UNIQUE SPECIAL LOCAL DATA 455 00:14:32,040 --> 00:14:33,600 MANAGEMENT COSTS. 456 00:14:33,600 --> 00:14:35,760 AND A KEY POINT HERE IS ALL 457 00:14:35,760 --> 00:14:36,760 COSTS PROPOSED FOR DATA 458 00:14:36,760 --> 00:14:38,520 MANAGEMENT AND SHARING IN AN 459 00:14:38,520 --> 00:14:39,240 APPLICATION MUST BE INCURRED 460 00:14:39,240 --> 00:14:41,280 DURING THE PERFORMANCE PERIOD. 461 00:14:41,280 --> 00:14:43,520 THE GUIDE NOTICE DOES OUTLINE 462 00:14:43,520 --> 00:14:45,400 UNALLOWABLE COSTS AS WELL. 463 00:14:45,400 --> 00:14:49,160 YOU CANNOT CHARGE INFRASTRUCTURE 464 00:14:49,160 --> 00:14:51,320 COSTS THAT ARE TYPICALLY 465 00:14:51,320 --> 00:14:53,160 INDIRECTS OR F & A AND COSTS 466 00:14:53,160 --> 00:14:54,160 ASSOCIATED WITH THE ROUTINE 467 00:14:54,160 --> 00:14:59,200 CONDUCT OF RESEARCH, COSTS FOR 468 00:14:59,200 --> 00:15:04,800 GAINING ACCESS TO O RESEARCH DAA 469 00:15:04,800 --> 00:15:05,880 ARE UNALLOWABLE COSTS. 470 00:15:05,880 --> 00:15:07,760 THIS IS SPECIFIC TO EXTRAMURAL. 471 00:15:07,760 --> 00:15:09,680 SO THE IMPLEMENTATION OF THE 472 00:15:09,680 --> 00:15:12,200 POLICY IS BEST VISUALIZED IF YOU 473 00:15:12,200 --> 00:15:13,120 FOLLOW THE LIFECYCLE OF THE 474 00:15:13,120 --> 00:15:13,560 PLAN. 475 00:15:13,560 --> 00:15:15,520 AND I'LL START WITH SUBMISSION 476 00:15:15,520 --> 00:15:16,000 OF A PLAN. 477 00:15:16,000 --> 00:15:17,640 IT GOES IN WITH AN APPLICATION 478 00:15:17,640 --> 00:15:19,240 AS DESCRIBED IN THE APPLICATION 479 00:15:19,240 --> 00:15:25,320 DWIED, GUIDE, THE FULL PLAN IS 480 00:15:25,320 --> 00:15:27,000 SUBMITTED, AND THE BRIEF PLAN 481 00:15:27,000 --> 00:15:27,840 DESCRIPTION AS I JUST MENTIONED 482 00:15:27,840 --> 00:15:30,000 IS INCLUDED IN THE BUDGET JUST 483 00:15:30,000 --> 00:15:30,320 JUSTIFICATION. 484 00:15:30,320 --> 00:15:32,840 AFTER A PLAN IS SUBMITTED, IN 485 00:15:32,840 --> 00:15:34,600 THE PLAN ASSESSMENT PHASE, PEER 486 00:15:34,600 --> 00:15:36,240 REVIEWERS WILL NOT SEE THE DATA 487 00:15:36,240 --> 00:15:38,000 MANAGEMENT AND SHARING PLAN. 488 00:15:38,000 --> 00:15:39,280 WHAT THEY WILL SEE IS THE BUDGET 489 00:15:39,280 --> 00:15:40,640 AND THE BUDGET JUSTIFICATION, 490 00:15:40,640 --> 00:15:41,720 AND THEY CAN COMMENT ON THAT BUT 491 00:15:41,720 --> 00:15:43,560 THEY WILL NOT SCORE IT. 492 00:15:43,560 --> 00:15:47,440 ONLY THE NIH PROGRAM OFFICER 493 00:15:47,440 --> 00:15:48,600 WILL SEE AND ASSESS THAT PLAN. 494 00:15:48,600 --> 00:15:50,280 IF A PROGRAM OFFICER DETERMINES 495 00:15:50,280 --> 00:15:51,440 THAT REVISIONS ARE NEEDED, THEY 496 00:15:51,440 --> 00:15:53,120 CAN REQUEST REVISIONS DURING THE 497 00:15:53,120 --> 00:15:54,640 REGULAR JUST IN TIME PROCESS, 498 00:15:54,640 --> 00:15:56,600 PLANS MUST BE APPROVED BEFORE AN 499 00:15:56,600 --> 00:15:59,640 AWARD IS MADE. 500 00:15:59,640 --> 00:16:01,560 THERE IS A PATH WHERE PEER 501 00:16:01,560 --> 00:16:03,080 REVIEWERS CAN REVIEW AND SCORE 502 00:16:03,080 --> 00:16:04,400 PLANS AND THIS IS ONLY WHEN DATA 503 00:16:04,400 --> 00:16:06,440 SHARING IS DETERMINED BY NIH TO 504 00:16:06,440 --> 00:16:07,800 BE INTEGRAL TO THE FUNDING 505 00:16:07,800 --> 00:16:08,840 OPPORTUNITY ANNOUNCEMENT. 506 00:16:08,840 --> 00:16:11,040 FINALLY, WHEN A PLAN IS APPROVED 507 00:16:11,040 --> 00:16:14,240 FOR AN EXTRAMURAL APPLICATION, 508 00:16:14,240 --> 00:16:18,000 AND THE AWARD IS MADE, THAT 509 00:16:18,000 --> 00:16:19,120 BECOME AS TERM AND CONDITION OF 510 00:16:19,120 --> 00:16:20,480 THE AWARD, AND THEN THE GRANTEE 511 00:16:20,480 --> 00:16:22,120 IS EXPECTED TO REPORT ON 512 00:16:22,120 --> 00:16:23,320 PROGRESS OF THEIR DATA 513 00:16:23,320 --> 00:16:26,160 MANAGEMENT AND SHARING 514 00:16:26,160 --> 00:16:27,520 ACTIVITIES THROUGH THE RPPR 515 00:16:27,520 --> 00:16:28,200 PROGRESS. 516 00:16:28,200 --> 00:16:29,920 FAILURE TO COMPLY WITH THE 517 00:16:29,920 --> 00:16:31,960 APPROVED PLAN MAY RESULT IN AN 518 00:16:31,960 --> 00:16:33,400 ENFORCEMENT ACTION AND COULD 519 00:16:33,400 --> 00:16:39,120 AFFECT FUTURE FUNDING DECISIONS. 520 00:16:39,120 --> 00:16:40,800 FOR THE LAST SECTION OF TODAY'S 521 00:16:40,800 --> 00:16:41,600 PRESENTATION, I'LL TALK ABOUT 522 00:16:41,600 --> 00:16:42,680 THE DATA SHARING RESOURCES THAT 523 00:16:42,680 --> 00:16:45,320 WE ARE DEVELOPING FOR OUR STAFF 524 00:16:45,320 --> 00:16:48,200 AND INVESTIGATORS. 525 00:16:48,200 --> 00:16:49,200 I'LL START WITH THE RESOURCES 526 00:16:49,200 --> 00:16:50,720 THAT WE ARE DEVELOPING FOR STAFF 527 00:16:50,720 --> 00:16:54,920 AND RESEARCHERS, SPECIFICALLY TO 528 00:16:54,920 --> 00:16:55,960 SUPPORT READINESS FOR COMPLIANCE 529 00:16:55,960 --> 00:16:57,160 WITH THE DATA MANAGEMENT AND 530 00:16:57,160 --> 00:16:58,120 SHARING POLICY. 531 00:16:58,120 --> 00:17:00,280 OUR GOALS IN DEVELOPING THESE 532 00:17:00,280 --> 00:17:01,280 RESOURCES WHICH AS I MENTIONED 533 00:17:01,280 --> 00:17:05,080 ARE DIRECTLY INFORMED BY ADVICE 534 00:17:05,080 --> 00:17:06,560 FROM OUR ADVISORY COMMITTEES IS 535 00:17:06,560 --> 00:17:08,920 TO PREPARE OUR STAFF TO FIELD 536 00:17:08,920 --> 00:17:10,440 QUESTIONS FROM RESEARCHERS AND 537 00:17:10,440 --> 00:17:12,200 TO REVIEW DATA MANAGEMENT AND 538 00:17:12,200 --> 00:17:13,720 SHARING PLANS, AND TO SUPPORT 539 00:17:13,720 --> 00:17:16,360 OUR EXTRAMURAL AND INTRAMURAL 540 00:17:16,360 --> 00:17:17,640 RESEARCHERS AS THEY DEVELOP DATA 541 00:17:17,640 --> 00:17:18,520 MANAGEMENT AND SHARING PLANS. 542 00:17:18,520 --> 00:17:20,920 WE HAVE A NUMBER OF RESOURCES 543 00:17:20,920 --> 00:17:22,680 AND CURATED LINKS TO OTHER 544 00:17:22,680 --> 00:17:24,440 RESOURCES ON OUR WEBSITE. 545 00:17:24,440 --> 00:17:26,520 THIS IS ON THE PUBLIC NICHD 546 00:17:26,520 --> 00:17:30,440 WEBSITE AND THE LINK IS BELOW. 547 00:17:30,440 --> 00:17:31,720 THIS INCLUDES BUT IS NOT LIMITED 548 00:17:31,720 --> 00:17:33,640 TO TIPS FOR WRITING A DATA 549 00:17:33,640 --> 00:17:34,960 MANAGEMENT AND SHARING PLAN. 550 00:17:34,960 --> 00:17:35,920 I HIGHLY ENCOURAGE YOU HAVE A 551 00:17:35,920 --> 00:17:36,920 LOOK AT THAT DOCUMENT. 552 00:17:36,920 --> 00:17:38,560 WE ALSO HAVE SEVERAL EXAMPLE 553 00:17:38,560 --> 00:17:39,960 DATA MANAGEMENT AND SHARING 554 00:17:39,960 --> 00:17:41,480 PLANS AVAILABLE ON OUR WEBSITE, 555 00:17:41,480 --> 00:17:42,920 AND THIS WEEK WE WILL BE 556 00:17:42,920 --> 00:17:44,800 RELEASING A DATA REPOSITORY 557 00:17:44,800 --> 00:17:48,720 FINDER WEB TOOL, WHICH WILL HELP 558 00:17:48,720 --> 00:17:49,840 RESEARCHERS TO DEVELOP OUT THEIR 559 00:17:49,840 --> 00:17:52,240 PLANS BECAUSE THE TOOL SPECIFIES 560 00:17:52,240 --> 00:17:54,200 FEATURES ASSOCIATED WITH DATA 561 00:17:54,200 --> 00:17:55,840 REPOSITORIES THAT MAP TO THE 562 00:17:55,840 --> 00:17:57,480 ELEMENTS EXPECTED IN DATA 563 00:17:57,480 --> 00:17:59,000 MANAGEMENT AND SHARING PLANS. 564 00:17:59,000 --> 00:18:01,000 INTERNALLY, WE HAVE DEVELOPED 565 00:18:01,000 --> 00:18:02,360 AND CONTINUE TO DEVELOP 566 00:18:02,360 --> 00:18:03,600 EXTENSIVE FREQUENTLY ASKED 567 00:18:03,600 --> 00:18:06,000 QUESTIONS FOR OUR INTRAMURAL AND 568 00:18:06,000 --> 00:18:07,440 EXTRAMURAL STAFF, AND FOR OUR 569 00:18:07,440 --> 00:18:08,320 EXTRAMURAL STAFF, WE HAVE 570 00:18:08,320 --> 00:18:09,760 DEVELOPED PLAN ASSESSMENT 571 00:18:09,760 --> 00:18:13,360 GUIDANCE TO SUPPORT CONSISTENCY 572 00:18:13,360 --> 00:18:17,000 IN DATA MANAGEMENT AND SHARING 573 00:18:17,000 --> 00:18:21,160 PLAN ASSESSMENT ACROSS THE 574 00:18:21,160 --> 00:18:22,560 INSTITUTE. 575 00:18:22,560 --> 00:18:24,080 WE RECOGNIZE WHILE THESE DATA 576 00:18:24,080 --> 00:18:25,520 MANAGEMENT AND SHARING POLICY 577 00:18:25,520 --> 00:18:26,640 IMPLEMENTATION RESOURCES ARE 578 00:18:26,640 --> 00:18:28,480 FOCUSED ON READINESS FOR 579 00:18:28,480 --> 00:18:30,000 COMPLYING WITH THE POLICY, WE 580 00:18:30,000 --> 00:18:32,000 ALSO NEED TO FOCUS ON THE 581 00:18:32,000 --> 00:18:34,600 LONGER-TERM NEED FOR THE DATA 582 00:18:34,600 --> 00:18:36,800 ECOSYSTEM WHERE RESEARCHERS CAN 583 00:18:36,800 --> 00:18:38,000 SHARE DATA DESCRIBED IN THEIR 584 00:18:38,000 --> 00:18:39,120 PLANS AND SO THAT THE RESEARCH 585 00:18:39,120 --> 00:18:40,640 COMMUNITY CAN ULTIMATELY FIND, 586 00:18:40,640 --> 00:18:42,960 ACCESS AND USE THOSE DATA FOR 587 00:18:42,960 --> 00:18:47,080 THE FURTHERANCE OF OUR VISION 588 00:18:47,080 --> 00:18:48,200 AND THE NICHD MISSION. 589 00:18:48,200 --> 00:18:52,160 SO THIS SLIDE OUTLINES OUR NICHD 590 00:18:52,160 --> 00:18:53,000 DATA ECOSYSTEM STRATEGY. 591 00:18:53,000 --> 00:18:54,760 WE ARE LEVERAGING OUR 592 00:18:54,760 --> 00:18:55,440 OPPORTUNITIES. 593 00:18:55,440 --> 00:18:57,160 WE HAVE THREE BIG OPPORTUNITIES 594 00:18:57,160 --> 00:19:00,320 OUTLINED HERE. 595 00:19:00,320 --> 00:19:02,960 THE POLICY IS GOING TO VASTLY 596 00:19:02,960 --> 00:19:07,320 INCREASE TH THE SCALE AND SCOPE 597 00:19:07,320 --> 00:19:09,120 AVAILABLE FOR RESPONSIBLE AND 598 00:19:09,120 --> 00:19:10,640 INNOVATIVE USE. 599 00:19:10,640 --> 00:19:12,520 THEY COORDINATE THE DEVELOPMENT 600 00:19:12,520 --> 00:19:14,560 OF TRANS-NIH ECOSYSTEM 601 00:19:14,560 --> 00:19:15,720 RESOURCES, INCLUDING 602 00:19:15,720 --> 00:19:16,760 REPOSITORIES, TOOLS, STANDARDS 603 00:19:16,760 --> 00:19:17,840 AND TRAININGS. 604 00:19:17,840 --> 00:19:19,480 AND WE CAN LEVERAGE THOSE FOR 605 00:19:19,480 --> 00:19:21,680 OUR OWN NEEDS BY INFORMING THEIR 606 00:19:21,680 --> 00:19:23,640 DEVELOPMENT AT THE OUTSET. 607 00:19:23,640 --> 00:19:25,840 WE ALSO AT NICHD HAVE A NUMBER 608 00:19:25,840 --> 00:19:28,800 OF EXISTING INVESTMENTS IN 609 00:19:28,800 --> 00:19:30,080 MODERN DATA SHARING 610 00:19:30,080 --> 00:19:31,840 INFRASTRUCTURE, AND BOTH I AND 611 00:19:31,840 --> 00:19:36,040 VALERIE COTTON SERVE LEADERSHIP 612 00:19:36,040 --> 00:19:38,240 ROLES IN THE INTEROPERABILITY 613 00:19:38,240 --> 00:19:40,280 ACTIVITIES, SPECIFICALLY THE NIH 614 00:19:40,280 --> 00:19:41,920 CLUB PLATFORMS FOR 615 00:19:41,920 --> 00:19:43,240 INTEROPERABILITY ACTIVITY AND 616 00:19:43,240 --> 00:19:46,800 THE NIH RESEARCHER OFF SERVICE, 617 00:19:46,800 --> 00:19:47,920 WHICH I'LL MENTION IN A MINUTE. 618 00:19:47,920 --> 00:19:50,720 OUR STRATEGY IS TO LEVERAGE 619 00:19:50,720 --> 00:19:53,840 THESE OPPORTUNITIES, BUT ALSO TO 620 00:19:53,840 --> 00:19:55,040 FOCUS ON ADDRESSING KEY 621 00:19:55,040 --> 00:19:56,480 CHALLENGES AND NEEDS AROUND DATA 622 00:19:56,480 --> 00:19:57,160 SCIENCE AND SHARING. 623 00:19:57,160 --> 00:19:59,880 A CHALLENGE THAT WE ARE 624 00:19:59,880 --> 00:20:02,440 ATTRACTING IS THAT NIH RELEVANT 625 00:20:02,440 --> 00:20:04,040 DATA ARE AND WILL BE SHARED IN 626 00:20:04,040 --> 00:20:06,560 MANY DIVERSE NIH DATA SYSTEMS. 627 00:20:06,560 --> 00:20:08,720 WE RECOGNIZE THAT NIH NEEDS 628 00:20:08,720 --> 00:20:10,360 INCREASED VISIBILITY INTO THE 629 00:20:10,360 --> 00:20:11,600 CURRENT STATE OF THESE DATA 630 00:20:11,600 --> 00:20:15,320 SYSTEMS AND HOW OUR DIVERSE NIH 631 00:20:15,320 --> 00:20:16,600 COMMUNITIES USE OR ASPIRE TO USE 632 00:20:16,600 --> 00:20:18,080 THE SYSTEMS AND THEIR DATA. 633 00:20:18,080 --> 00:20:20,040 WE ALSO RECOGNIZE THAT 634 00:20:20,040 --> 00:20:20,960 DEMOCRATIZING ACCESS TO THE 635 00:20:20,960 --> 00:20:25,160 NICHD DATA SYSTEM -- ECOSYSTEM 636 00:20:25,160 --> 00:20:26,360 REQUIRES ACTIVE ENGAGEMENT WITH 637 00:20:26,360 --> 00:20:27,960 AND TRAINING OF DIVERSE 638 00:20:27,960 --> 00:20:29,400 RESEARCHERS, DEVELOPERS AND 639 00:20:29,400 --> 00:20:34,200 OTHER COMMUNITY MEMBERS. 640 00:20:34,200 --> 00:20:35,960 THE NIH DATA AND SPECIMEN HUB IS 641 00:20:35,960 --> 00:20:37,400 ONE OF THOSE MAJOR INVESTMENTS 642 00:20:37,400 --> 00:20:38,360 IN MODERN DATA SHARING 643 00:20:38,360 --> 00:20:39,400 INFRASTRUCTURE. 644 00:20:39,400 --> 00:20:41,560 IT'S A CENTRALIZED RESOURCE FOR 645 00:20:41,560 --> 00:20:43,440 OUR CLINICAL RESEARCHERS, 646 00:20:43,440 --> 00:20:45,160 INTRAMURAL AND EXTRAMURAL, TO 647 00:20:45,160 --> 00:20:48,200 SHARE DE-IDENTIFIED DATA AND 648 00:20:48,200 --> 00:20:49,440 CLINICAL STUDIES FUNDED BY 649 00:20:49,440 --> 00:20:49,640 NICHD. 650 00:20:49,640 --> 00:20:52,160 IT IS A PORTAL BOTH FOR 651 00:20:52,160 --> 00:20:53,600 SEARCHING DATA AND FOR 652 00:20:53,600 --> 00:20:55,560 REQUESTING ACCESS TO 653 00:20:55,560 --> 00:20:56,560 BIOSPECIMENS ASSOCIATED WITH 654 00:20:56,560 --> 00:20:58,760 SELECTED STUDIES IN DASH AND 655 00:20:58,760 --> 00:21:03,120 ULTIMATELY DASH MEA AIMS TO 656 00:21:03,120 --> 00:21:03,800 ACCELERATE SCIENTIFIC FINDINGS 657 00:21:03,800 --> 00:21:05,280 TO ULTIMATELY IMPROVE HUMAN 658 00:21:05,280 --> 00:21:05,720 HEALTH. 659 00:21:05,720 --> 00:21:07,960 DASH WAS CONCEPTUALIZED IN 2015 660 00:21:07,960 --> 00:21:09,080 AS A COLLABORATION WITH THE 661 00:21:09,080 --> 00:21:11,080 DIVISION OF EXTRAMURAL RESEARCH 662 00:21:11,080 --> 00:21:12,400 AND OUR CIO. 663 00:21:12,400 --> 00:21:14,240 WE CURRENTLY HOST DATA FROM OVER 664 00:21:14,240 --> 00:21:16,760 200 NIH-FUNDED CLINICAL STUDIES 665 00:21:16,760 --> 00:21:18,760 SPREAD ACROSS 54 STUDY TOPICS 666 00:21:18,760 --> 00:21:19,920 DISPLAYED IN THE TOP RIGHT OF 667 00:21:19,920 --> 00:21:21,160 THE SLIDE. 668 00:21:21,160 --> 00:21:23,120 WE FIELDED ALSO 600 ACCESS 669 00:21:23,120 --> 00:21:25,240 REQUESTS FOR THOSE DATA IN THE 670 00:21:25,240 --> 00:21:28,040 LAST FIVE YEARS, OF WHICH OVER 671 00:21:28,040 --> 00:21:29,920 83 HAVE RESULTED IN 672 00:21:29,920 --> 00:21:30,480 PUBLICATIONS. 673 00:21:30,480 --> 00:21:31,960 CURRENTLY THERE ARE NINE STUDIES 674 00:21:31,960 --> 00:21:33,840 IN DASH THAT OFFER BIOSPECIMENS 675 00:21:33,840 --> 00:21:36,000 THROUGH THE BIOSPECIMEN ACCESS 676 00:21:36,000 --> 00:21:37,520 REQUEST, AND WE FIELDED 12 677 00:21:37,520 --> 00:21:38,360 ACCESS REQUESTS. 678 00:21:38,360 --> 00:21:40,000 AS I MENTIONED, THIS NUMBER IS 679 00:21:40,000 --> 00:21:43,080 GOING TO INCREASE SUBSTANTIALLY 680 00:21:43,080 --> 00:21:44,120 AS WE HAVE MORE AND MORE DATA 681 00:21:44,120 --> 00:21:48,480 BEING SHARED UNDER THE POLICY. 682 00:21:48,480 --> 00:21:51,600 NICHD DASH IS AN NICHD-WIDE 683 00:21:51,600 --> 00:21:55,120 CLINICAL DATA REPOSITORY, AND 684 00:21:55,120 --> 00:21:56,920 THE PROGRAM MOVED INTO OUR 685 00:21:56,920 --> 00:21:57,560 OFFICE LAST YEAR. 686 00:21:57,560 --> 00:21:58,920 SINCE THEN, WE HAVE RELEASED 687 00:21:58,920 --> 00:22:01,600 SEVERAL NEW DATA MANAGEMENT AND 688 00:22:01,600 --> 00:22:02,600 SHARING POLICY-SPECIFIC 689 00:22:02,600 --> 00:22:02,880 FEATURES. 690 00:22:02,880 --> 00:22:04,720 WE ARE INTEGRATED WITH THE 691 00:22:04,720 --> 00:22:05,560 RESEARCHER OFF SERVICE. 692 00:22:05,560 --> 00:22:08,000 THAT SUPPORTS SINGLE SIGN-ON SO 693 00:22:08,000 --> 00:22:09,520 RESEARCHERS WHO WANT TO ACCESS 694 00:22:09,520 --> 00:22:10,760 STUDY DATA THAT ARE SHARED IN 695 00:22:10,760 --> 00:22:12,720 DASH AND IN OTHER NIH DATA 696 00:22:12,720 --> 00:22:14,760 REPOSITORIES CAN DO SO EASILY. 697 00:22:14,760 --> 00:22:19,240 WE ARE ASSIGNING DIGITAL -- 698 00:22:19,240 --> 00:22:20,640 IDENTIFIERS TO OUR STUDIES TO 699 00:22:20,640 --> 00:22:23,440 HELP RESEARCHERS ADDRESS 700 00:22:23,440 --> 00:22:25,480 EXPECTED ELEMENTS AND ALSO 701 00:22:25,480 --> 00:22:26,720 SUPPORTS FINDABILITY AND DATA 702 00:22:26,720 --> 00:22:28,120 USE CITATION OVER TIME, SO WE 703 00:22:28,120 --> 00:22:30,240 CAN EVALUATE OUTCOMES OF DATA 704 00:22:30,240 --> 00:22:30,760 SHARING. 705 00:22:30,760 --> 00:22:34,800 WE HAVE UPDATED OUR EXTERNAL 706 00:22:34,800 --> 00:22:37,080 RESOURCES WEBPAGE AS A PROTOTYPE 707 00:22:37,080 --> 00:22:39,400 FOR A FUTURE DASH CAT LOI FOR 708 00:22:39,400 --> 00:22:40,720 SEARCHING ALL NICHD FUNDED DATA 709 00:22:40,720 --> 00:22:42,720 ASSETS AND WE RECENTLY SIGNED A 710 00:22:42,720 --> 00:22:43,440 MODERNIZATION CONTRACT FOR DASH, 711 00:22:43,440 --> 00:22:44,880 WHERE WE WILL BE DEVELOPING OVER 712 00:22:44,880 --> 00:22:46,720 THE NEXT FEW YEARS ADDITIONAL 713 00:22:46,720 --> 00:22:48,920 DATA MANAGEMENT AND SHARING 714 00:22:48,920 --> 00:22:50,120 POLICY-SPECIFIC FEATURES. 715 00:22:50,120 --> 00:22:51,240 THESE INCLUDE BUT ARE NOT 716 00:22:51,240 --> 00:22:53,120 LIMITED TO A FOUR-MONTH 717 00:22:53,120 --> 00:22:54,640 SUBMISSION TO RELEASE TIMELINE 718 00:22:54,640 --> 00:22:55,360 FOR DATA. 719 00:22:55,360 --> 00:22:57,160 THAT REQUIRES US TO UPDATE OUR 720 00:22:57,160 --> 00:22:58,680 PROCESSES AND TECHNOLOGIES 721 00:22:58,680 --> 00:23:01,520 AROUND SUBMISSION, CURATION 722 00:23:01,520 --> 00:23:03,320 AND -- AND IT INCLUDES THE 723 00:23:03,320 --> 00:23:05,040 ABILITY TO RELEASE VERSION, DATA 724 00:23:05,040 --> 00:23:06,720 AND PUBLICATION-RELATED DATA 725 00:23:06,720 --> 00:23:07,520 RELEASES IN COMPLIANCE WITH THE 726 00:23:07,520 --> 00:23:07,760 POLICY. 727 00:23:07,760 --> 00:23:09,440 WE ARE WORKING ON SENDING 728 00:23:09,440 --> 00:23:11,160 AUTOMATED STUDY REGISTRATION. 729 00:23:11,160 --> 00:23:13,240 WE ARE DEVELOPING COMPLIANCE 730 00:23:13,240 --> 00:23:15,000 TRACKING RESOURCES FOR OUR 731 00:23:15,000 --> 00:23:16,560 STAFF, AND WE ARE WORKING WITH 732 00:23:16,560 --> 00:23:18,160 OUR INTRAMURAL STAFF TO 733 00:23:18,160 --> 00:23:19,480 STREAMLINE THE SUBMISSION OF 734 00:23:19,480 --> 00:23:20,800 INTRAMURAL DATA FROM OUR 735 00:23:20,800 --> 00:23:22,640 INTERNAL DATA MANAGEMENT SYSTEM 736 00:23:22,640 --> 00:23:28,760 TO DASH. 737 00:23:28,760 --> 00:23:30,320 IN ORDER TO INCREASE VISIBILITY 738 00:23:30,320 --> 00:23:31,480 INTO THE DATA SYSTEMS USED BY 739 00:23:31,480 --> 00:23:33,680 OUR RESEARCHERS AND THE WAY THEY 740 00:23:33,680 --> 00:23:35,120 DEAL AND AS SPIRE TO WORK WITHIN 741 00:23:35,120 --> 00:23:40,320 THESE SYSTEMS WE ESTABLISHED A 742 00:23:40,320 --> 00:23:41,600 DATA ECOSYSTEM ANALYSIS WITH GUY 743 00:23:41,600 --> 00:23:45,000 CGUIDANCE FROM OUR ECOSYSTEM 744 00:23:45,000 --> 00:23:45,960 WORKING GROUP. 745 00:23:45,960 --> 00:23:47,960 DASH WILL BE A CENTRAL COMPONENT 746 00:23:47,960 --> 00:23:49,680 IN THE ECOSYSTEM BOTH FOR 747 00:23:49,680 --> 00:23:50,920 STORING CLINICAL DATA AND 748 00:23:50,920 --> 00:23:51,960 FACILITATING RESEARCH ACROSS THE 749 00:23:51,960 --> 00:23:53,640 MANY SYSTEMS WHERE OUR DATA AND 750 00:23:53,640 --> 00:23:54,400 RELEVANT DATA LIVE. 751 00:23:54,400 --> 00:23:57,040 WE HAVE TWO PARALLEL ACTIVITIES 752 00:23:57,040 --> 00:23:59,640 UNDER THE ECOSYSTEM ANALYSIS. 753 00:23:59,640 --> 00:24:02,280 WE ARE ACTIVELY -- WELL, FIRST 754 00:24:02,280 --> 00:24:06,320 OUR ECOSYSTEM WORKING GROUP 755 00:24:06,320 --> 00:24:09,120 DEVELOPED AN INVENTORY OF DATA 756 00:24:09,120 --> 00:24:10,240 REPOSITORIES WHERE OUR 757 00:24:10,240 --> 00:24:11,240 RESEARCHERS CURRENTLY SHARE AND 758 00:24:11,240 --> 00:24:11,520 ACCESS DATA. 759 00:24:11,520 --> 00:24:13,880 WE ARE NOW ASSESSING THOSE NICHD 760 00:24:13,880 --> 00:24:15,600 RELEVANT DATA ECO -- DATA 761 00:24:15,600 --> 00:24:16,160 SYSTEMS. 762 00:24:16,160 --> 00:24:17,720 AND THE SYSTEM LOGOS ON THE 763 00:24:17,720 --> 00:24:19,360 RIGHT ARE JUST A SUBSET OF THAT 764 00:24:19,360 --> 00:24:20,520 INVENTORY, AND THEY DEMONSTRATE 765 00:24:20,520 --> 00:24:22,200 THE BREADTH OF RESEARCH AND DATA 766 00:24:22,200 --> 00:24:25,520 TYPES IN THESE SYSTEMS. 767 00:24:25,520 --> 00:24:27,640 IN PARALLEL, THE ECOSYSTEM 768 00:24:27,640 --> 00:24:28,400 ANALYSIS PROJECT TEAM IS 769 00:24:28,400 --> 00:24:29,960 DEVELOPING USE CASES FROM OUR 770 00:24:29,960 --> 00:24:31,120 RESEARCHERS, STAFF AND BROADER 771 00:24:31,120 --> 00:24:33,120 COMMUNITY MEMBERS. 772 00:24:33,120 --> 00:24:35,200 TOGETHER, THE ASSESSMENT OF THE 773 00:24:35,200 --> 00:24:37,680 DATA SYSTEMS AND THE USE CASES 774 00:24:37,680 --> 00:24:39,280 WILL INFORM THE IDENTIFICATION 775 00:24:39,280 --> 00:24:41,600 OF DATA REPOSITORIES THAT DO OR 776 00:24:41,600 --> 00:24:44,920 CAN MEET AN NICHD THRESHOLD FOR 777 00:24:44,920 --> 00:24:45,520 LONG-TERM DATA SHARING. 778 00:24:45,520 --> 00:24:47,800 THEY WILL ALSO INFORM THE 779 00:24:47,800 --> 00:24:49,240 IDENTIFICATION OF AN NICHD 780 00:24:49,240 --> 00:24:51,560 APPROACH TO BUILDING CONNECTIONS 781 00:24:51,560 --> 00:24:53,760 BETWEEN DASH AND OTHER NICHD, 782 00:24:53,760 --> 00:24:56,360 NIH, AND EXTERNAL SYSTEMS, IN 783 00:24:56,360 --> 00:24:58,840 THE SPIRIT OF INTEROPERABILITY 784 00:24:58,840 --> 00:25:00,520 AND LEVERAGING EXISTING 785 00:25:00,520 --> 00:25:03,240 INVESTMENTS. 786 00:25:03,240 --> 00:25:04,760 FINALLY, IN RECOGNITION OF THE 787 00:25:04,760 --> 00:25:07,200 NEED TO SUPPORT EQUITABLE ACCESS 788 00:25:07,200 --> 00:25:10,680 TO OUR NICHD DATA ECOSYSTEM, OUR 789 00:25:10,680 --> 00:25:13,960 NICHD DATA SCHOLAR HAS DEVELOPED 790 00:25:13,960 --> 00:25:16,040 A HYBRID COURSE CALLED THE 791 00:25:16,040 --> 00:25:19,240 ELEMENTS OF STYLE IN WORKFLOW 792 00:25:19,240 --> 00:25:19,920 CREATION AND MAINTENANCE. 793 00:25:19,920 --> 00:25:21,160 THIS TRAINING TEACHES 794 00:25:21,160 --> 00:25:23,560 RESEARCHERS BEST PRACTICES IN 795 00:25:23,560 --> 00:25:25,480 MANAGING AND ANALYZING 796 00:25:25,480 --> 00:25:27,320 NICHD-RELEVANT DATA USING 797 00:25:27,320 --> 00:25:29,960 EXISTING TOOLS AND PLATFORMS AND 798 00:25:29,960 --> 00:25:32,680 DATA, AND THEN HELPS THEM TO 799 00:25:32,680 --> 00:25:34,400 SHARE THEIR ANALYSIS WORKFLOWS 800 00:25:34,400 --> 00:25:36,960 FROM OTHER RESEARCHERS FOR 801 00:25:36,960 --> 00:25:37,280 RE-USE. 802 00:25:37,280 --> 00:25:39,160 THE AUDIENCE -- THIS IS A 803 00:25:39,160 --> 00:25:40,000 RESEARCHER-FOCUSED TRAINING. 804 00:25:40,000 --> 00:25:42,240 IT'S TARGETED TO RESEARCHES WITH 805 00:25:42,240 --> 00:25:44,280 LIMITED DATA SCIENCE SKILLS AND 806 00:25:44,280 --> 00:25:47,800 UTILIZES TWO NICHD-LED TRANS-NIH 807 00:25:47,800 --> 00:25:50,000 DATA INFRASTRUCTURES. 808 00:25:50,000 --> 00:25:52,720 THE INCLUDE DATA HUB FOR 809 00:25:52,720 --> 00:25:53,720 PARTICIPANTS WITH DOWN'S 810 00:25:53,720 --> 00:25:56,920 SYNDROME AND THE FIRST KIDS DATA 811 00:25:56,920 --> 00:25:59,080 RESOURCE CENTER, CANCER AND 812 00:25:59,080 --> 00:26:02,520 STRUCTURAL BIRTH DEFECTS. 813 00:26:02,520 --> 00:26:06,200 DR. MAYS HAS ALREADY TAUGHT FOUR 814 00:26:06,200 --> 00:26:08,600 TIMES AND MATERIALS ARE 815 00:26:08,600 --> 00:26:10,280 AVAILABLE ONLINE FOR SELF YOU 816 00:26:10,280 --> 00:26:13,000 HAD STUDY IN OUR ONLINE 817 00:26:13,000 --> 00:26:15,440 REPOSITORY GITHUB. 818 00:26:15,440 --> 00:26:17,080 DR. MAYS WILL CONTINUE TO TRAIN 819 00:26:17,080 --> 00:26:22,840 MORE RESEARCHES I IN 2023 AT LAE 820 00:26:22,840 --> 00:26:23,320 MEETINGS. 821 00:26:23,320 --> 00:26:24,920 I WILL CLOSE OUT TODAY WITH THIS 822 00:26:24,920 --> 00:26:26,560 GRAPHIC TO EMPHASIZE WE ARE 823 00:26:26,560 --> 00:26:28,600 BUILDING A COMMUNITY-FOCUSED 824 00:26:28,600 --> 00:26:29,560 ECOSYSTEM THAT ALIGNS WITH THE 825 00:26:29,560 --> 00:26:29,880 NICHD MISSION. 826 00:26:29,880 --> 00:26:31,560 AND I WANT TO THANK YOU, THE 827 00:26:31,560 --> 00:26:33,160 ADVISORY COUNCIL, AND DRS. 828 00:26:33,160 --> 00:26:34,560 BIANCHI AND CERNICH FOR THEIR 829 00:26:34,560 --> 00:26:36,360 SUPPORT AND GUIDANCE IN THE 830 00:26:36,360 --> 00:26:37,640 ESTABLISHMENT OF THE OFFICE OF 831 00:26:37,640 --> 00:26:38,400 DATA SCIENCE AND SHARING. 832 00:26:38,400 --> 00:26:44,880 THANK YOU VERY MUCH. 833 00:26:44,880 --> 00:26:46,320 >> THANK YOU SO MUCH, REBECCA. 834 00:26:46,320 --> 00:26:48,040 THAT WAS FANTASTIC AND SO 835 00:26:48,040 --> 00:26:50,760 TIMELY, AND WE HAVE TIME -- WE 836 00:26:50,760 --> 00:26:52,400 ALLOTTED ABOUT 15 MINUTES FOR 837 00:26:52,400 --> 00:26:52,880 QUESTIONS. 838 00:26:52,880 --> 00:26:55,480 SO WE'RE OPENING THIS UP TO 839 00:26:55,480 --> 00:27:03,960 COUNCILMEMBERS. 840 00:27:03,960 --> 00:27:04,560 DR. RESNICK. 841 00:27:04,560 --> 00:27:06,880 >> I WANT TO FIRST START WITH, 842 00:27:06,880 --> 00:27:08,840 REALLY, RECOGNITION, THE 843 00:27:08,840 --> 00:27:10,080 LEADERSHIP ROLE NICHD IS TAKING, 844 00:27:10,080 --> 00:27:13,760 YOU KNOW, IN DEVELOPING THESE 845 00:27:13,760 --> 00:27:14,080 STRATEGIES. 846 00:27:14,080 --> 00:27:15,960 WE WORK ACROSS MULTIPLE 847 00:27:15,960 --> 00:27:18,240 DIFFERENT INSTITUTES AND CENTERS 848 00:27:18,240 --> 00:27:20,240 ACROSS NIH, I THINK -- AND 849 00:27:20,240 --> 00:27:22,960 ACROSS MULTIPLE CONSORTIA-BASED 850 00:27:22,960 --> 00:27:23,280 INSTITUTIONS. 851 00:27:23,280 --> 00:27:24,480 I THINK THERE'S BEEN A LOT OF 852 00:27:24,480 --> 00:27:27,480 ANXIETY AND CONFUSION AROUND THE 853 00:27:27,480 --> 00:27:28,520 DATA SHARING MANAGEMENT PLAN, 854 00:27:28,520 --> 00:27:31,800 WHAT IT MEANS TO ADDRESS IT. 855 00:27:31,800 --> 00:27:37,160 AND I THINK AS A CONTEXT OF 856 00:27:37,160 --> 00:27:39,800 PROVIDING THE EXACT RIGHT 857 00:27:39,800 --> 00:27:41,720 BALANCE BETWEEN THE VERY CLEAR 858 00:27:41,720 --> 00:27:44,000 GUIDANCE BUT AT THE SAME TIME 859 00:27:44,000 --> 00:27:45,840 LEADING ON BEHALF OF DEVELOPING 860 00:27:45,840 --> 00:27:48,000 ACCELERATED FRAMEWORKS FOR DIE A 861 00:27:48,000 --> 00:27:51,600 SHADATASHARING FROM AN ECOSYSTEM 862 00:27:51,600 --> 00:27:51,960 PERSPECTIVE. 863 00:27:51,960 --> 00:27:53,760 I ALSO WANT TO RECOGNIZE, GIVEN 864 00:27:53,760 --> 00:27:56,120 ALL THAT WORK, I SUSPECT THAT 865 00:27:56,120 --> 00:27:58,440 THERE ARE GOING TO BE CONTINUED 866 00:27:58,440 --> 00:28:00,840 CHALLENGES AND OPPORTUNITIES FOR 867 00:28:00,840 --> 00:28:01,600 IMPROVEMENT. 868 00:28:01,600 --> 00:28:05,320 REBECCA, YOU MENTIONED BRIEFLY 869 00:28:05,320 --> 00:28:06,960 THREE KEY 870 00:28:06,960 --> 00:28:07,720 OPPORTUNITIES/CHALLENGES THAT 871 00:28:07,720 --> 00:28:12,640 YOU SEE IN THE FUTURE. 872 00:28:12,640 --> 00:28:14,160 ONE THING WE'VE NOTICED IS THAT 873 00:28:14,160 --> 00:28:16,040 WHILE NICHD IS REALLY DOING A 874 00:28:16,040 --> 00:28:21,600 GREAT JOB LEADING -- PROVIDING 875 00:28:21,600 --> 00:28:22,720 THESE RESOURCES, THERE'S NOT YET 876 00:28:22,720 --> 00:28:24,600 UNIFORMITY OF INTERPRETATION OF 877 00:28:24,600 --> 00:28:26,880 THE DATA SHARING GUIDELINES 878 00:28:26,880 --> 00:28:28,200 ACROSS THE DIFFERENT ICs AND 879 00:28:28,200 --> 00:28:32,040 HOW THEY GET IMPLEMENTED. 880 00:28:32,040 --> 00:28:33,600 WHAT ARE YOUR THOUGHTS -- AT 881 00:28:33,600 --> 00:28:35,640 LEAST THAT'S MY ASSESSMENT. 882 00:28:35,640 --> 00:28:36,640 WE'D LOVE TO HEAR YOURS. 883 00:28:36,640 --> 00:28:37,800 WHAT ARE YOUR THOUGHTS AROUND 884 00:28:37,800 --> 00:28:40,320 WAYS THAT, YOU KNOW, YOU CAN 885 00:28:40,320 --> 00:28:41,960 TACKLE THAT AND/OR ADDRESS THAT? 886 00:28:41,960 --> 00:28:44,160 I THINK, AGAIN, DRIVING FORWARD 887 00:28:44,160 --> 00:28:45,160 WITH DOCUMENTATION AND 888 00:28:45,160 --> 00:28:47,560 LEADERSHIP AS A KEY ONE, BUT 889 00:28:47,560 --> 00:28:49,360 WONDERING WHAT YOU'VE ASSESSED. 890 00:28:49,360 --> 00:28:50,840 >> AND YOU HIT ON THE FIRST 891 00:28:50,840 --> 00:28:52,480 POINT, AND THAT'S A GREAT 892 00:28:52,480 --> 00:28:53,560 QUESTION, ADAM. 893 00:28:53,560 --> 00:28:55,160 SO CONSISTENCY IN IMPLEMENTATION 894 00:28:55,160 --> 00:28:56,200 OF THE POLICY. 895 00:28:56,200 --> 00:28:58,280 IT'S AN IMPORTANT QUESTION. 896 00:28:58,280 --> 00:29:00,360 IT'S KIND OF A TWO-PRONG ANSWER 897 00:29:00,360 --> 00:29:00,560 HERE. 898 00:29:00,560 --> 00:29:02,280 FIRST WE ARE FOCUSED ON THE WORD 899 00:29:02,280 --> 00:29:04,520 OF THE POLICY AND IMPLEMENTING 900 00:29:04,520 --> 00:29:06,160 IT AS SUCH. 901 00:29:06,160 --> 00:29:07,680 WE DID DECIDE WITH OUR DATA 902 00:29:07,680 --> 00:29:09,000 SHARING COMMITTEES THAT WAS OUR 903 00:29:09,000 --> 00:29:09,560 STRATEGY. 904 00:29:09,560 --> 00:29:11,320 WE WANT -- THE POLICY IS REALLY 905 00:29:11,320 --> 00:29:12,960 WELL WRITTEN AND EXTENSIVE 906 00:29:12,960 --> 00:29:14,680 ENOUGH, SO WE'RE NOT ADDING ANY 907 00:29:14,680 --> 00:29:15,280 ADDITIONAL REQUIREMENTS HERE. 908 00:29:15,280 --> 00:29:16,760 ALL WE ARE DOING IS TAKING THE 909 00:29:16,760 --> 00:29:19,160 WORD OF THE POLICY, INTERFACING 910 00:29:19,160 --> 00:29:20,920 REGULARLY WITH THE OFFICE OF 911 00:29:20,920 --> 00:29:22,640 EXTRAMURAL RESEARCH AND THE 912 00:29:22,640 --> 00:29:25,280 OFFICE OF SCIENCE POLICY TO TURN 913 00:29:25,280 --> 00:29:26,440 IT INTO PLAIN LANGUAGE RESOURCES 914 00:29:26,440 --> 00:29:27,720 THAT ARE POSTED ON OUR WEBSITE 915 00:29:27,720 --> 00:29:29,040 AND SHARED WITH OUR COLLEAGUES 916 00:29:29,040 --> 00:29:31,560 AT OTHER ICs AND ALSO 917 00:29:31,560 --> 00:29:33,440 INTERNALLY IN OUR FAQs. 918 00:29:33,440 --> 00:29:35,080 WE ALSO PARTICIPATE IN 919 00:29:35,080 --> 00:29:36,080 TRANS-NIH -- THERE'S A WORKING 920 00:29:36,080 --> 00:29:37,600 GROUP ON DATA MANAGEMENT AND 921 00:29:37,600 --> 00:29:39,280 SHARING POLICY IMPLEMENTATION 922 00:29:39,280 --> 00:29:40,280 AND GOVERNANCE, AND WE HAVE BEEN 923 00:29:40,280 --> 00:29:41,960 A PART OF THAT SINCE DAY ONE AND 924 00:29:41,960 --> 00:29:43,640 WE WILL CONTINUE TO DO THAT SO 925 00:29:43,640 --> 00:29:45,560 WE COLLABORATE EXTENSIVELY WITH 926 00:29:45,560 --> 00:29:48,120 OUR IC COUNTERPARTS TO ENSURE WE 927 00:29:48,120 --> 00:29:50,360 ARE MAINTAINING AS MUCH 928 00:29:50,360 --> 00:29:51,400 CONSISTENCY AS POSSIBLE IN THE 929 00:29:51,400 --> 00:29:53,360 IMPLEMENTATION. 930 00:29:53,360 --> 00:29:53,920 >> GREAT. 931 00:29:53,920 --> 00:29:55,680 AND AGAIN, KUDOS TO THE TEAM. 932 00:29:55,680 --> 00:29:57,640 I KNOW THIS IS REALLY HARD WORK 933 00:29:57,640 --> 00:30:00,040 AND TAKES A LOT OF COORDINATED 934 00:30:00,040 --> 00:30:00,400 EFFORT. 935 00:30:00,400 --> 00:30:03,040 SO REALLY EXCITED. 936 00:30:03,040 --> 00:30:05,640 >> DR. BARKIN. 937 00:30:05,640 --> 00:30:06,880 >> GOOD AFTERNOON, EVERYBODY. 938 00:30:06,880 --> 00:30:07,240 THANK YOU. 939 00:30:07,240 --> 00:30:08,880 THIS IS REALLY AN EXCITING 940 00:30:08,880 --> 00:30:11,760 DIRECTION, AND I ABSOLUTELY ECHO 941 00:30:11,760 --> 00:30:12,680 DR. RESNICK'S COMMENTS THAT 942 00:30:12,680 --> 00:30:14,040 YOU'RE TAKING US IN A REALLY 943 00:30:14,040 --> 00:30:14,840 IMPORTANT DIRECTION AND YOU'RE 944 00:30:14,840 --> 00:30:16,920 THINKING ABOUT IT IN SUCH A 945 00:30:16,920 --> 00:30:17,880 SYSTEMATIC HOLISTIC WAY, SO 946 00:30:17,880 --> 00:30:19,760 THANK YOU TO YOU AND THE TEAM. 947 00:30:19,760 --> 00:30:22,960 I HAVE TWO QUESTIONS FOR YOU. 948 00:30:22,960 --> 00:30:24,720 RECOGNIZING THAT MANY PEOPLE AS 949 00:30:24,720 --> 00:30:26,240 THEY'RE GATHERING DATA HAVE ALL 950 00:30:26,240 --> 00:30:27,440 THESE DIFFERENT DATA ELEMENT 951 00:30:27,440 --> 00:30:31,280 TYPES AS YOU SAID, IT APPEARS 952 00:30:31,280 --> 00:30:33,000 THAT WHEN I LOOK AT ALL THE 953 00:30:33,000 --> 00:30:34,120 DIFFERENT NICHD REPOSITORIES, 954 00:30:34,120 --> 00:30:36,480 THAT WE WOULD HAVE TO 955 00:30:36,480 --> 00:30:38,520 POTENTIALLY SORT OF DECONSTRUCT 956 00:30:38,520 --> 00:30:40,320 OUR DATA SO THAT THESE ELEMENTS 957 00:30:40,320 --> 00:30:42,440 OF THE DATA GO TO THIS 958 00:30:42,440 --> 00:30:43,600 REPOSITORY, AND OTHER ELEMENTS 959 00:30:43,600 --> 00:30:45,600 GO TO ANOTHER, SO THE SURVEYS 960 00:30:45,600 --> 00:30:47,560 MIGHT GO TO THIS PART, THE 961 00:30:47,560 --> 00:30:48,560 BIOSPECIMENS MIGHT GO TO THIS 962 00:30:48,560 --> 00:30:50,120 PART. 963 00:30:50,120 --> 00:30:52,400 AND I'M WONDERING ABOUT THAT IN 964 00:30:52,400 --> 00:30:54,240 THE DECONSTRUCTING, IT MIGHT BE 965 00:30:54,240 --> 00:30:56,560 DIFFICULT TO GET BACK TO THAT 966 00:30:56,560 --> 00:31:00,400 REPLICATION OF FINDINGS. 967 00:31:00,400 --> 00:31:01,840 SO THAT'S MY FIRST QUESTION. 968 00:31:01,840 --> 00:31:04,480 MY SECOND QUESTION HAS TO DO 969 00:31:04,480 --> 00:31:06,440 WITH IF THERE ARE BY OWE 970 00:31:06,440 --> 00:31:12,440 SPECIBUY YOESPECIMENS, WHAT IT O 971 00:31:12,440 --> 00:31:15,040 SEND OUR SPECIMENS TO THE 972 00:31:15,040 --> 00:31:16,120 BIOREPOSITORY AND THAT IN THE 973 00:31:16,120 --> 00:31:17,320 DASH REPOSITORY, THEY WOULD 974 00:31:17,320 --> 00:31:19,200 STORE, FOR EXAMPLE, OUR 975 00:31:19,200 --> 00:31:21,480 SPECIMENS AT A MINUS 80 FREEZER. 976 00:31:21,480 --> 00:31:23,520 SO CAN YOU CLARIFY THOSE THINGS 977 00:31:23,520 --> 00:31:24,000 FOR ME? 978 00:31:24,000 --> 00:31:25,120 >> SURE. 979 00:31:25,120 --> 00:31:25,440 ABSOLUTELY. 980 00:31:25,440 --> 00:31:26,920 AND THANK YOU, DR. BARKIN. 981 00:31:26,920 --> 00:31:28,240 I APPRECIATE EVERYBODY'S REALLY 982 00:31:28,240 --> 00:31:30,240 POSITIVE COMMENTS. 983 00:31:30,240 --> 00:31:31,840 SO THE DECONSTRUCTING OF THE 984 00:31:31,840 --> 00:31:33,520 DATA, THIS IS THE NATURE OF THE 985 00:31:33,520 --> 00:31:34,800 NIH DATA ECOSYSTEM. 986 00:31:34,800 --> 00:31:37,320 OUR DATA REPOSITORIES ARE DOMAIN 987 00:31:37,320 --> 00:31:38,600 AND DATA TYPE-SPECIFIC, AND THEY 988 00:31:38,600 --> 00:31:40,160 ARE THAT WAY FOR A REASON. 989 00:31:40,160 --> 00:31:42,600 IT BECAUSE IT ALLOWS US TO CARE 990 00:31:42,600 --> 00:31:44,640 AND FEED FOR THE DATA IN A WAY 991 00:31:44,640 --> 00:31:46,240 THAT'S BEST INFORMED BY THE 992 00:31:46,240 --> 00:31:47,280 RESEARCH COMMUNITY THAT 993 00:31:47,280 --> 00:31:48,920 UNDERSTANDS EITHER THE DOMAIN OR 994 00:31:48,920 --> 00:31:49,920 THE DATA TYPE. 995 00:31:49,920 --> 00:31:53,480 BUT BY NATURE, THAT MEANS WE 996 00:31:53,480 --> 00:31:55,080 KNOW THE RESEARCH WE DO INVOLVES 997 00:31:55,080 --> 00:31:56,280 MANY DIFFERENT DATA TYPES, AND 998 00:31:56,280 --> 00:31:58,520 SO IT ENDS UP SPLITTING UP THE 999 00:31:58,520 --> 00:32:00,760 TTHEDATA INTO DIFFERENT 1000 00:32:00,760 --> 00:32:01,120 REPOSITORIES. 1001 00:32:01,120 --> 00:32:02,760 THERE ARE WAYS TO CONNECT THE 1002 00:32:02,760 --> 00:32:04,760 DATA, YOU MAINTAIN THE INTEGRITY 1003 00:32:04,760 --> 00:32:06,600 OF THE DATA IN THE GIVEN DATA 1004 00:32:06,600 --> 00:32:07,800 REPOSITORY, AND WHAT WE INTEND 1005 00:32:07,800 --> 00:32:11,200 DO IS TO ALLOW RESEARCHERS TO 1006 00:32:11,200 --> 00:32:13,040 KNOW WHEN THERE ARE ADATA FROM A 1007 00:32:13,040 --> 00:32:15,280 GIVEN STUDY IN THE DATA 1008 00:32:15,280 --> 00:32:16,040 REPOSITORIES. 1009 00:32:16,040 --> 00:32:16,640 THAT'S SOMETHING WE ALREADY DO 1010 00:32:16,640 --> 00:32:19,080 IN DASH, WE LINK OUT TO THE 1011 00:32:19,080 --> 00:32:20,840 DBGAP ACCESS NUMBERS, IF THERE 1012 00:32:20,840 --> 00:32:24,080 ARE GENOMICS DATA, AND THERE'S 1013 00:32:24,080 --> 00:32:25,400 CLINICAL DATA FOR A GIVEN STUDY 1014 00:32:25,400 --> 00:32:26,880 IN DASH, WE DO THAT. 1015 00:32:26,880 --> 00:32:29,240 THE IMPLEMENTATION OF DIGITAL 1016 00:32:29,240 --> 00:32:31,080 OBJECT IDENTIFIERS WILL ALLOW US 1017 00:32:31,080 --> 00:32:33,120 TO PERMANENTLY NEST THAT 1018 00:32:33,120 --> 00:32:34,720 INFORMATION IN THOSE DOIs SO 1019 00:32:34,720 --> 00:32:35,800 THAT'S SOMETHING WE ARE THINKING 1020 00:32:35,800 --> 00:32:37,640 ABOUT AND OTHER IC INSTITUTES 1021 00:32:37,640 --> 00:32:38,640 ARE ALREADY DOING THE SAME 1022 00:32:38,640 --> 00:32:39,760 THING. 1023 00:32:39,760 --> 00:32:41,840 SO I DON'T SEE ALL OF THE DATA 1024 00:32:41,840 --> 00:32:42,480 COMING TOGETHER. 1025 00:32:42,480 --> 00:32:43,800 IT MORE ABOUT MAKING SURE THAT 1026 00:32:43,800 --> 00:32:46,720 THERE ARE PERMANENT REFERENCES 1027 00:32:46,720 --> 00:32:48,400 TO ALL OF THE DIFFERENT PLACES 1028 00:32:48,400 --> 00:32:49,800 WHERE THOSE DATA LEFT UNDER A 1029 00:32:49,800 --> 00:32:54,640 GIVEN STUDY. 1030 00:32:54,640 --> 00:32:56,120 THE SECOND QUESTION ABOUT 1031 00:32:56,120 --> 00:32:56,960 BIOSPECIMENS, THAT IS NOT 1032 00:32:56,960 --> 00:32:57,920 INCLUDED IN THE POLICY. 1033 00:32:57,920 --> 00:33:00,120 THE POLICY IS VERY SPECIFIC TO 1034 00:33:00,120 --> 00:33:01,760 DATA MANAGEMENT AND SHARING, AND 1035 00:33:01,760 --> 00:33:03,600 THE COSTS ASSOCIATED WITH DATA 1036 00:33:03,600 --> 00:33:04,920 MANAGEMENT AND SHARING. 1037 00:33:04,920 --> 00:33:07,080 SO BIOSPECIMENS AT THIS POINT 1038 00:33:07,080 --> 00:33:08,720 ARE STILL COVERED UNDER RESOURCE 1039 00:33:08,720 --> 00:33:11,400 SHARING PLANS, AND ANY 1040 00:33:11,400 --> 00:33:12,280 EXPECTATIONS OF BIOSPECIMEN 1041 00:33:12,280 --> 00:33:14,160 SHARING WOULD LIKELY BE PART OF 1042 00:33:14,160 --> 00:33:16,280 A PROGRAM ANNOUNCEMENT. 1043 00:33:16,280 --> 00:33:17,120 >> OKAY. 1044 00:33:17,120 --> 00:33:19,000 AND THEN MY LAST POINT THAT I 1045 00:33:19,000 --> 00:33:20,720 JUST WANTED TO THROW OUT IS THAT 1046 00:33:20,720 --> 00:33:23,920 I KNOW THAT ALL OF US USES THE 1047 00:33:23,920 --> 00:33:26,240 DATA RESOURCE CENTER THAT'S ALL 1048 00:33:26,240 --> 00:33:28,560 ABOUT CURATING DATA, 1049 00:33:28,560 --> 00:33:29,840 SYNTHESIZING DATA AND THEN 1050 00:33:29,840 --> 00:33:31,280 CREATING A RESEARCHER WORK 1051 00:33:31,280 --> 00:33:31,720 BADGE. 1052 00:33:31,720 --> 00:33:33,480 IT SEEMS LIKE WHAT YOU JUST 1053 00:33:33,480 --> 00:33:34,960 DESCRIBED SOUNDS PRETTY SIMILAR 1054 00:33:34,960 --> 00:33:36,320 EXCEPT THAT THERE IS THE 1055 00:33:36,320 --> 00:33:37,800 POTENTIAL TO TAKE CALL OF THE 1056 00:33:37,800 --> 00:33:39,840 DATA, AS YOU SHOWED US IN THE 1057 00:33:39,840 --> 00:33:41,360 ECOSYSTEM, AND BRING THEM INTO 1058 00:33:41,360 --> 00:33:43,560 ONE CENTRALIZED PLACE, SO THAT 1059 00:33:43,560 --> 00:33:45,200 WHEN PEOPLE ARE THEN LOOKING TO 1060 00:33:45,200 --> 00:33:47,760 ASK QUESTIONS OF THE DATA, THEY 1061 00:33:47,760 --> 00:33:49,520 HAVE ACCESS TO MORE CURATED 1062 00:33:49,520 --> 00:33:50,480 DATA. 1063 00:33:50,480 --> 00:33:52,040 I JUST WAS CURIOUS IF YOU LOOKED 1064 00:33:52,040 --> 00:33:53,800 INTO THAT AS A MODEL. 1065 00:33:53,800 --> 00:33:56,160 >> WE HAVE NOT LOOKED INTO THE 1066 00:33:56,160 --> 00:33:58,920 MODEL OF INTEGRATING DATA FROM 1067 00:33:58,920 --> 00:34:02,000 EXISTING REPOSITORIES INTO ONE. 1068 00:34:02,000 --> 00:34:03,440 THAT FEELS A BIT OUT OF SCOPE 1069 00:34:03,440 --> 00:34:06,840 FOR WHAT WE'RE DOING AT THIS 1070 00:34:06,840 --> 00:34:07,280 POINT. 1071 00:34:07,280 --> 00:34:08,640 IT'S JUST A MASSIVE CHALLENGE, 1072 00:34:08,640 --> 00:34:10,000 AND I THINK IT REALLY DEPENDS IF 1073 00:34:10,000 --> 00:34:11,320 WE SEE THERE ARE SPECIFIC USE 1074 00:34:11,320 --> 00:34:12,720 CASES WHERE THERE ARE HIGH 1075 00:34:12,720 --> 00:34:14,720 PRIORITY DATASETS THAT NEED THIS 1076 00:34:14,720 --> 00:34:17,760 TYPE OF CURE RANGE OF MOTION AND 1077 00:34:17,760 --> 00:34:18,680 INTEGRATION, BUT AT THIS POINT, 1078 00:34:18,680 --> 00:34:21,800 THAT'S GENERALLY NOT HOW WE 1079 00:34:21,800 --> 00:34:23,040 APPROACH IT, RATHER, WHAT WE DO 1080 00:34:23,040 --> 00:34:24,240 IS MAKE SURE RESEARCHERS KNOW 1081 00:34:24,240 --> 00:34:25,920 WHERE TO GET ALL THE 1082 00:34:25,920 --> 00:34:27,320 PIECES/PARTS OF DATA FOR A GIVEN 1083 00:34:27,320 --> 00:34:29,640 STUDY AND HAVE SUFFICIENT 1084 00:34:29,640 --> 00:34:31,200 DOCUMENTATION TO UNDERSTAND HOW 1085 00:34:31,200 --> 00:34:32,840 TO APPROPRIATELY USE AND ANALYZE 1086 00:34:32,840 --> 00:34:34,160 THOSE DATA. 1087 00:34:34,160 --> 00:34:35,880 >> COULD I ADD SOMETHING, 1088 00:34:35,880 --> 00:34:36,120 REBECCA? 1089 00:34:36,120 --> 00:34:38,520 YOU KNOW, NOW THAT A LOT OF 1090 00:34:38,520 --> 00:34:40,160 PEOPLE ARE HAVING IN-PERSON 1091 00:34:40,160 --> 00:34:44,480 MEETINGS, I'M GOING BACK TO 1092 00:34:44,480 --> 00:34:45,640 VARIOUS ACADEMIC CENTERS, AND 1093 00:34:45,640 --> 00:34:50,800 I'M ALWAYS SURPRISED HOW FEW 1094 00:34:50,800 --> 00:34:51,480 ORGANIZATIONS EVEN KNOW ABOUT 1095 00:34:51,480 --> 00:34:51,880 DASH. 1096 00:34:51,880 --> 00:34:53,000 SO I'M GOING TO MAKE A REQUEST 1097 00:34:53,000 --> 00:34:54,680 TO ALL OF OUR COUNCILMEMBERS TO 1098 00:34:54,680 --> 00:34:57,440 SERVE AS AMBASSADORS FOR DASH. 1099 00:34:57,440 --> 00:34:59,960 THIS IS AN INCREDIBLE RESOURCE, 1100 00:34:59,960 --> 00:35:03,640 PARTICULARLY FOR TRAINEES. 1101 00:35:03,640 --> 00:35:05,120 IN WHICH THEY CAN DEVELOP A 1102 00:35:05,120 --> 00:35:08,440 HYPOTHESIS AND TEST IT VIRTUALLY 1103 00:35:08,440 --> 00:35:09,600 IMMEDIATELY, THEY DON'T HAVE TO 1104 00:35:09,600 --> 00:35:11,280 WORRY ABOUT GETTING AN IRB 1105 00:35:11,280 --> 00:35:12,240 PROTOCOL APPROVED, THEY DON'T 1106 00:35:12,240 --> 00:35:14,120 HAVE TO WORRY ABOUT ENROLLING 1107 00:35:14,120 --> 00:35:15,280 PARTICIPANTS OR GETTING 1108 00:35:15,280 --> 00:35:15,760 BIOSPECIMENS. 1109 00:35:15,760 --> 00:35:18,400 THEY CAN DEVELOP THEIR 1110 00:35:18,400 --> 00:35:19,520 HYPOTHESIS, REQUEST THE CLINICAL 1111 00:35:19,520 --> 00:35:20,720 DATA, WHICH IS ALREADY CLEANED 1112 00:35:20,720 --> 00:35:22,480 UP AND ANONYMIZED AND READY FOR 1113 00:35:22,480 --> 00:35:24,240 USE, AND THEN THEY CAN REQUEST 1114 00:35:24,240 --> 00:35:28,320 THE BIOSPECIMENS. 1115 00:35:28,320 --> 00:35:29,880 SO I THINK THERE'S -- WE NEED TO 1116 00:35:29,880 --> 00:35:33,680 WORK ON WAYS OF DEMYSTIFYING IT 1117 00:35:33,680 --> 00:35:35,800 FOR ALL OF OUR POTENTIAL 1118 00:35:35,800 --> 00:35:36,400 INVESTIGATORS. 1119 00:35:36,400 --> 00:35:37,760 SO THAT THEY DO KNOW WHERE IT IS 1120 00:35:37,760 --> 00:35:43,920 AND HOW THEY CAN ACCESS IT. 1121 00:35:43,920 --> 00:35:46,840 LET'S GO TO DR. ROWITCH. 1122 00:35:46,840 --> 00:35:49,360 >> GREAT INITIATIVE, GLAD TO SEE 1123 00:35:49,360 --> 00:35:50,040 NICHD'S LEADERSHIP HERE. 1124 00:35:50,040 --> 00:35:52,120 MY QUESTION IS ABOUT METADATA, 1125 00:35:52,120 --> 00:35:54,320 WHICH YOU MENTIONED, REBECCA, IN 1126 00:35:54,320 --> 00:35:55,960 RESPECT TO HUMAN CELL ATLASSING. 1127 00:35:55,960 --> 00:35:59,360 THIS IS AN INTERNATIONAL EFFORT 1128 00:35:59,360 --> 00:36:00,680 NOW STARTING TO PROGRESS TO 1129 00:36:00,680 --> 00:36:03,200 PEDIATRIC STUDIES LED BY THE 1130 00:36:03,200 --> 00:36:03,960 ZUCKERBERG INITIATIVE. 1131 00:36:03,960 --> 00:36:04,960 ONE OF THE BOTTLENECKS I'VE 1132 00:36:04,960 --> 00:36:06,720 HEARD ON THESE CALLS IS, HOW 1133 00:36:06,720 --> 00:36:09,880 MUCH AND WHAT METADATA IS 1134 00:36:09,880 --> 00:36:13,000 ACCEPTABLE AND SHOULD WE BE 1135 00:36:13,000 --> 00:36:16,920 ASCERTAINING SO THAT STUDIES ARE 1136 00:36:16,920 --> 00:36:18,120 COMPARABLE, WE CAN START TO MAKE 1137 00:36:18,120 --> 00:36:20,440 BRIDGES TO HUMAN IMPACT AND 1138 00:36:20,440 --> 00:36:23,520 DISEASE INSIGHTS FROM MORE SORT 1139 00:36:23,520 --> 00:36:24,480 OF DEVELOPMENTAL BIOLOGY 1140 00:36:24,480 --> 00:36:26,680 APPROACH OR PATHOLOGICAL 1141 00:36:26,680 --> 00:36:28,240 APPROACH TO ATLASSING, AND THAT 1142 00:36:28,240 --> 00:36:29,560 THE STANDARDS AREN'T THERE. 1143 00:36:29,560 --> 00:36:30,960 SO IF NIH IS SETTING STANDARDS, 1144 00:36:30,960 --> 00:36:32,640 AND THEY WILL BE REQUIRED ON OUR 1145 00:36:32,640 --> 00:36:34,080 NIH GRANTS, IT SEEMS LIKE A 1146 00:36:34,080 --> 00:36:37,440 GREAT OPPORTUNITY TO NOW WORK 1147 00:36:37,440 --> 00:36:39,160 WITH THE FOUNDATIONS LIKE ALLEN 1148 00:36:39,160 --> 00:36:41,840 INSTITUTE, THE BRAIN INITIATIVE, 1149 00:36:41,840 --> 00:36:43,840 ZUCKERBERG, AND COME UP WITH THE 1150 00:36:43,840 --> 00:36:45,480 STANDARD METADATA SET THAT I 1151 00:36:45,480 --> 00:36:47,880 THINK WILL REALLY HELP TO MAKE 1152 00:36:47,880 --> 00:36:49,160 MORE COHERENT THESE MULTIPLE 1153 00:36:49,160 --> 00:36:49,440 EFFORTS. 1154 00:36:49,440 --> 00:36:50,880 I'M SURE YOU'VE BEEN THINKING 1155 00:36:50,880 --> 00:36:52,520 ABOUT THAT AND I DO THINK IT'S A 1156 00:36:52,520 --> 00:36:53,680 GREAT OPPORTUNITY IF NIH TAKES 1157 00:36:53,680 --> 00:36:56,720 THE LEAD. 1158 00:36:56,720 --> 00:36:58,000 >> IT'S A GREAT QUESTION. 1159 00:36:58,000 --> 00:36:59,520 I'LL TRY TO TEASE THAT APART. 1160 00:36:59,520 --> 00:37:01,320 NIH DOES NOT GENERALLY REQUIRE 1161 00:37:01,320 --> 00:37:02,960 STAN DARMDZ BROADLY. 1162 00:37:02,960 --> 00:37:05,880 SPECIFIC PROGRAMS MAY. 1163 00:37:05,880 --> 00:37:07,200 I EXPECT STANDARDS TO BE USED 1164 00:37:07,200 --> 00:37:09,640 FOR BOTH METADATA AND DATA BUT 1165 00:37:09,640 --> 00:37:10,960 WE DON'T GENERALLY PICK DATA 1166 00:37:10,960 --> 00:37:11,920 STANDARDS SO I DO WANT TO 1167 00:37:11,920 --> 00:37:16,640 CLARIFY THAT. 1168 00:37:16,640 --> 00:37:18,600 YOU POINT OUT THE HUMAN CELL 1169 00:37:18,600 --> 00:37:19,800 ATLAS WITH ZUCKERBERG AND THE 1170 00:37:19,800 --> 00:37:20,360 BRAIN INITIATIVE. 1171 00:37:20,360 --> 00:37:21,560 THIS IS EXACTLY AN EXAMPLE OF 1172 00:37:21,560 --> 00:37:22,680 THE COMMUNITY COMING TOGETHER 1173 00:37:22,680 --> 00:37:24,000 WITH EXPERTS ON THE DATA AND HOW 1174 00:37:24,000 --> 00:37:26,760 IT CAN BE USED FOR ANALYSIS. 1175 00:37:26,760 --> 00:37:27,960 THOSE ARE THE RESEARCHERS THAT 1176 00:37:27,960 --> 00:37:32,320 WE LOOK TO AS EXPERTS TO DEVELOP 1177 00:37:32,320 --> 00:37:37,840 OUT THE METADATA STANDARD AND 1178 00:37:37,840 --> 00:37:39,240 REQUIRED ELEMENTS IN THAT DATA 1179 00:37:39,240 --> 00:37:40,840 NECESSARY TO REPRODUCE FINDINGS 1180 00:37:40,840 --> 00:37:43,800 AND MERGE DATASETS OVER TIME. 1181 00:37:43,800 --> 00:37:45,080 SO I WOULD LOOK TO THE 1182 00:37:45,080 --> 00:37:45,840 REPOSITORIES TO DEVELOP THIS 1183 00:37:45,840 --> 00:37:46,200 OUT. 1184 00:37:46,200 --> 00:37:47,720 I DO AGREE THAT THIS IS WHAT WE 1185 00:37:47,720 --> 00:37:48,280 WANT TO WATCH. 1186 00:37:48,280 --> 00:37:49,600 I MENTIONED OUR STANDARDS 1187 00:37:49,600 --> 00:37:50,960 TRAININGS AND PARTNERSHIPS 1188 00:37:50,960 --> 00:37:51,640 ACTIVITY. 1189 00:37:51,640 --> 00:37:52,800 THIS IS THE KIND OF PLACE WHERE 1190 00:37:52,800 --> 00:37:54,240 WE WOULD ENGAGE WITH THE 1191 00:37:54,240 --> 00:37:56,280 COMMUNITY, WORKING IN THE 1192 00:37:56,280 --> 00:37:57,480 REPOSITORY SPACE TO LEARN ABOUT 1193 00:37:57,480 --> 00:37:58,960 THE METADATA STANDARDS THEY ARE 1194 00:37:58,960 --> 00:38:00,120 DEVELOPING AND THEN TO 1195 00:38:00,120 --> 00:38:00,880 DISSEMINATE THAT INFORMATION 1196 00:38:00,880 --> 00:38:02,720 MORE BROADLY FROM THE PLATFORMS 1197 00:38:02,720 --> 00:38:04,960 OUR OFFICE HAS. 1198 00:38:04,960 --> 00:38:05,840 >> THAT'S GREAT. 1199 00:38:05,840 --> 00:38:07,320 JUST TO ADD, I THINK THERE WILL 1200 00:38:07,320 --> 00:38:09,480 BE A WORKSHOP TO DEAL WITH THIS, 1201 00:38:09,480 --> 00:38:10,960 AND IT SEEMS LIKE A GREAT 1202 00:38:10,960 --> 00:38:11,720 OPPORTUNITY FOR NICHD TO BE AT 1203 00:38:11,720 --> 00:38:13,560 THE TABLE. 1204 00:38:13,560 --> 00:38:14,320 >> THAT'S A GREAT IDEA. 1205 00:38:14,320 --> 00:38:17,000 THANK YOU, DR. ROWITCH. 1206 00:38:17,000 --> 00:38:17,520 >> THANK YOU. 1207 00:38:17,520 --> 00:38:19,400 DR. FAIR. 1208 00:38:19,400 --> 00:38:20,720 >> HELLO. 1209 00:38:20,720 --> 00:38:21,320 YES. 1210 00:38:21,320 --> 00:38:22,920 SO IT SOUNDS LIKE YOU'RE BUSY, 1211 00:38:22,920 --> 00:38:26,400 REBECCA. 1212 00:38:26,400 --> 00:38:27,720 A LOT GOING ON. 1213 00:38:27,720 --> 00:38:30,120 MY QUESTION IS, AS YOU KNOW, 1214 00:38:30,120 --> 00:38:31,680 WE'VE KIND OF BEEN AT THIS WHOLE 1215 00:38:31,680 --> 00:38:32,440 REPOSITORY AND THINKING THROUGH 1216 00:38:32,440 --> 00:38:33,560 THIS STUFF FOR QUITE A WHILE, 1217 00:38:33,560 --> 00:38:35,320 EVEN WITH YOU. 1218 00:38:35,320 --> 00:38:38,480 AND MY QUESTION IS, YOU KNOW, 1219 00:38:38,480 --> 00:38:42,760 THERE ARE A LOT OF FOLKS OUT IN 1220 00:38:42,760 --> 00:38:43,560 THE COMMUNITY TRYING OR 1221 00:38:43,560 --> 00:38:47,160 ATTEMPTING TO DO SIMILAR THINGS 1222 00:38:47,160 --> 00:38:48,240 THAT YOU'RE TRYING TO WORK ON 1223 00:38:48,240 --> 00:38:52,000 HERE AT NICHD. 1224 00:38:52,000 --> 00:38:53,520 AND YOU KIND OF ANSWERED IT JUST 1225 00:38:53,520 --> 00:38:55,600 RIGHT THERE AT THE END, LIKE HOW 1226 00:38:55,600 --> 00:38:58,440 ARE WE WORKING WITH THOSE 1227 00:38:58,440 --> 00:38:59,360 INVESTIGATORS, A LOT OF THE 1228 00:38:59,360 --> 00:39:01,440 INSTITUTIONS THEMSELVES ARE 1229 00:39:01,440 --> 00:39:02,560 BEING FUNDED TO DO SOME OF THESE 1230 00:39:02,560 --> 00:39:03,920 TYPES OF THINGS, SO THERE'S A 1231 00:39:03,920 --> 00:39:06,720 LITTLE BIT OF A KIND OF PUSH TO 1232 00:39:06,720 --> 00:39:09,800 DO IT INTERNALLY AT NIH OR 1233 00:39:09,800 --> 00:39:11,120 EXTERNALLY, AND YOU KNOW, HOW 1234 00:39:11,120 --> 00:39:13,720 ARE WE INTERACTING AND MAKING 1235 00:39:13,720 --> 00:39:15,080 SURE THERE'S LIKE WHAT I CALL 1236 00:39:15,080 --> 00:39:16,520 KIND OF THE MAXIMAL FLEXIBILITY 1237 00:39:16,520 --> 00:39:19,240 FOR THE INVESTIGATOR, YOU KNOW, 1238 00:39:19,240 --> 00:39:20,560 BECAUSE WE JUST DON'T KNOW HOW 1239 00:39:20,560 --> 00:39:21,760 PEOPLE WANT TO INTERACT WITH 1240 00:39:21,760 --> 00:39:22,880 THESE DATA HALF THE TIME. 1241 00:39:22,880 --> 00:39:24,600 YOU KNOW, THERE'S THE THINGS 1242 00:39:24,600 --> 00:39:26,400 THAT WE THINK THAT SHOULD BE THE 1243 00:39:26,400 --> 00:39:28,400 MOST OBVIOUS, AND THEN SOMEBODY 1244 00:39:28,400 --> 00:39:29,800 WILL COME UP WITH THIS CRAZY 1245 00:39:29,800 --> 00:39:31,880 IDEA OF HOW THEY WANT DO IT. 1246 00:39:31,880 --> 00:39:34,440 SO LIKE MAKING SURE THAT, YOU 1247 00:39:34,440 --> 00:39:35,720 KNOW, THAT WE'RE LEVERAGING 1248 00:39:35,720 --> 00:39:38,280 RESOURCES THAT EXIST AT THE 1249 00:39:38,280 --> 00:39:40,040 UNIVERSITIES, OTHER 1250 00:39:40,040 --> 00:39:41,600 INSTITUTIONS, WHILE AT THE SAME 1251 00:39:41,600 --> 00:39:43,320 TIME PROVIDING OPPORTUNITIES 1252 00:39:43,320 --> 00:39:46,600 INSIDE -- YOU KNOW, INSIDE THE 1253 00:39:46,600 --> 00:39:48,840 NIH FOR MAXIMAL DATA ACCESS. 1254 00:39:48,840 --> 00:39:50,680 I'M CURIOUS HOW YOU'RE BALANCING 1255 00:39:50,680 --> 00:39:51,160 ALL THAT. 1256 00:39:51,160 --> 00:39:54,200 BECAUSE GETTING PEOPLE TO BUY IN 1257 00:39:54,200 --> 00:39:56,560 USUALLY -- JUST LIKE DIANA WAS 1258 00:39:56,560 --> 00:39:57,640 SAYING, YOUNG INVESTIGATORS AND 1259 00:39:57,640 --> 00:39:58,760 PEOPLE THAT'S TRYING TO -- 1260 00:39:58,760 --> 00:40:00,040 PEOPLE WILL TAKE THE THINGS 1261 00:40:00,040 --> 00:40:01,200 THAT'S EASIEST FOR THEM. 1262 00:40:01,200 --> 00:40:02,400 IF THEIR OWN PLACES ARE ALREADY 1263 00:40:02,400 --> 00:40:04,120 PROVIDING SOME RESOURCES LIKE 1264 00:40:04,120 --> 00:40:05,880 THIS, THEN IT'S HARDER TO GET 1265 00:40:05,880 --> 00:40:07,520 THEM TO SWITCH TO SOMETHING 1266 00:40:07,520 --> 00:40:08,320 ELSE. 1267 00:40:08,320 --> 00:40:09,400 YOU KNOW WHAT I MEAN? 1268 00:40:09,400 --> 00:40:09,960 >> RIGHT. 1269 00:40:09,960 --> 00:40:10,720 AND I HEAR THAT. 1270 00:40:10,720 --> 00:40:14,080 I THINK THE EMPHASIS HERE AS 1271 00:40:14,080 --> 00:40:15,560 STATED BY THE POLICY IS ON BROAD 1272 00:40:15,560 --> 00:40:16,240 DATA SHARING. 1273 00:40:16,240 --> 00:40:17,800 AND SO WHAT WE NEED TO BE DOING 1274 00:40:17,800 --> 00:40:19,320 IS USING THESE ESTABLISHED 1275 00:40:19,320 --> 00:40:20,520 REPOSITORIES BECAUSE WE'VE 1276 00:40:20,520 --> 00:40:21,960 INVESTED IN THE INFRASTRUCTURE, 1277 00:40:21,960 --> 00:40:23,960 AND THEY HAVE A BROAD PLATFORM 1278 00:40:23,960 --> 00:40:26,160 TO COMMUNICATION OUT TO MANY 1279 00:40:26,160 --> 00:40:27,440 DIFFERENT RESEARCHERS THAT THESE 1280 00:40:27,440 --> 00:40:29,240 DATA ARE AVAILABLE, AND THEY 1281 00:40:29,240 --> 00:40:30,880 SHARE INFORMATION ABOUT THE DATA 1282 00:40:30,880 --> 00:40:31,760 SO ALL CAN USE IT. 1283 00:40:31,760 --> 00:40:33,600 SO WE ARE NOT ENCOURAGING THE 1284 00:40:33,600 --> 00:40:36,240 POLICY DOES NOT ENCOURAGE USING 1285 00:40:36,240 --> 00:40:37,680 CONSORTIUM DATA SHARING WITHIN A 1286 00:40:37,680 --> 00:40:38,840 UNIVERSITY BECAUSE THAT'S NOT IN 1287 00:40:38,840 --> 00:40:40,320 THE SPIRIT OF BROAD DATA 1288 00:40:40,320 --> 00:40:41,320 SHARING. 1289 00:40:41,320 --> 00:40:42,800 SO -- BUT I DO RECOGNIZE THAT 1290 00:40:42,800 --> 00:40:45,080 THERE IS A NEED TO STANDARDIZE 1291 00:40:45,080 --> 00:40:46,280 THE INTERFACES BETWEEN ALL OF 1292 00:40:46,280 --> 00:40:47,400 THESE SYSTEMS SO THAT THEY CAN 1293 00:40:47,400 --> 00:40:49,720 ALL TALK TO ONE ANOTHER, SO 1294 00:40:49,720 --> 00:40:55,640 PEOPLE CAN -- AND THIS GETS TO 1295 00:40:55,640 --> 00:40:57,000 THE QUESTION, THIS IS LED BY THE 1296 00:40:57,000 --> 00:40:58,680 OFFICE OF DATA SCIENCE STRATEGY, 1297 00:40:58,680 --> 00:41:03,000 AND WE ARE ENGAGED -- THE 1298 00:41:03,000 --> 00:41:04,160 PLATFORMS FOR INTEROPERABILITY, 1299 00:41:04,160 --> 00:41:05,480 WHERE WE ARE IMPLEMENTING, FOR 1300 00:41:05,480 --> 00:41:06,480 EXAMPLE, STANDARDS FROM THE 1301 00:41:06,480 --> 00:41:08,200 GLOBAL ALLIANCE FOR GENOMICS AND 1302 00:41:08,200 --> 00:41:09,480 HEALTH FOR HOW THE SYSTEMS TALK 1303 00:41:09,480 --> 00:41:11,600 TO ONE ANOTHER, HOW THEY CONVEY 1304 00:41:11,600 --> 00:41:13,560 METADATA ABOUT DATASET IN THE 1305 00:41:13,560 --> 00:41:15,520 REPOSITORIES, SO THAT THESE 1306 00:41:15,520 --> 00:41:17,400 SYSTEMS CAN TALK CONSISTENTLY 1307 00:41:17,400 --> 00:41:18,720 AMONGST THEMSELVES AND NEW 1308 00:41:18,720 --> 00:41:20,480 SYSTEMS WHEN THEY COME UP CAN 1309 00:41:20,480 --> 00:41:21,680 INTEGRATE INTO THE SYSTEM. 1310 00:41:21,680 --> 00:41:24,320 BUT GENERALLY, I STILL THINK IF 1311 00:41:24,320 --> 00:41:25,760 WE'RE TALKING ABOUT HUMAN DATA, 1312 00:41:25,760 --> 00:41:30,360 WHICH I THINK YOU ARE, WE DO 1313 00:41:30,360 --> 00:41:32,200 NEED TO BE TAKING INTO ACCOUNT 1314 00:41:32,200 --> 00:41:33,880 THAT CONTROL DATA ACCESS IS 1315 00:41:33,880 --> 00:41:34,880 IMPORTANT AROUND WE WANT TO BE 1316 00:41:34,880 --> 00:41:36,280 USING THESE ESTABLISHED DATA 1317 00:41:36,280 --> 00:41:37,200 REPOSITORIES THAT NIH IS 1318 00:41:37,200 --> 00:41:38,120 INVESTING IN TO MAKE SURE THAT 1319 00:41:38,120 --> 00:41:39,440 WE ARE APPROPRIATELY PROTECTING 1320 00:41:39,440 --> 00:41:42,680 THE DATASETS FOR PROVISIONING 1321 00:41:42,680 --> 00:41:44,040 ACCESS TO AUTHORIZED 1322 00:41:44,040 --> 00:41:44,320 RESEARCHERS. 1323 00:41:44,320 --> 00:41:46,040 >> THAT'S WHAT I'M SAYING, YOU 1324 00:41:46,040 --> 00:41:48,360 KNOW, THERE ARE A LOT OF PLACES, 1325 00:41:48,360 --> 00:41:50,040 A LOT OF -- SEVERAL INSTITUTIONS 1326 00:41:50,040 --> 00:41:51,200 AND MANY OF THEM THAT YOU KNOW 1327 00:41:51,200 --> 00:41:53,520 THAT HAVE BEEN VERY SUCCESSFUL 1328 00:41:53,520 --> 00:41:56,280 AT DISTRIBUTING HUMAN DATA IN A 1329 00:41:56,280 --> 00:41:56,800 CONTROLLED WAY. 1330 00:41:56,800 --> 00:42:01,960 YOU KNOW, AND PEOPLE USE ALL THE 1331 00:42:01,960 --> 00:42:02,760 TIME. 1332 00:42:02,760 --> 00:42:03,520 SO THAT'S WHY I THINK IT'S 1333 00:42:03,520 --> 00:42:04,320 REALLY IMPORTANT AS YOU'RE 1334 00:42:04,320 --> 00:42:05,720 WORKING THROUGH THIS TO THINK 1335 00:42:05,720 --> 00:42:07,240 THROUGH HOW YOU -- HOW DO YOU 1336 00:42:07,240 --> 00:42:10,600 WORK WITH THOSE REPOSITORIES TO 1337 00:42:10,600 --> 00:42:12,600 MAKE SURE THAT YOU'RE NOT 1338 00:42:12,600 --> 00:42:14,080 ALWAYS -- YOU'RE NOT FIGHTING 1339 00:42:14,080 --> 00:42:15,560 THE COMMUNITY, YOU KNOW, WITH 1340 00:42:15,560 --> 00:42:18,920 WHAT TO USE AND WHAT NOT TO USE 1341 00:42:18,920 --> 00:42:20,360 BECAUSE THOSE THINGS ARE FUNDED 1342 00:42:20,360 --> 00:42:22,960 EITHER BY NSF OR NIH MANY TIMES, 1343 00:42:22,960 --> 00:42:25,720 AND THE UNIVERSITY RESOURCES, SO 1344 00:42:25,720 --> 00:42:28,480 IT'S HARD BECAUSE THE SPACE IS 1345 00:42:28,480 --> 00:42:30,760 BROAD AND THERE'S LOTS OF FOLKS 1346 00:42:30,760 --> 00:42:31,800 WHO THINK THEY'RE THE BEST, YOU 1347 00:42:31,800 --> 00:42:33,920 KNOW? 1348 00:42:33,920 --> 00:42:35,000 SO THINK THROUGH HOW DO YOU WORK 1349 00:42:35,000 --> 00:42:38,360 WITH EVERYBODY TO MAKE A NATURAL 1350 00:42:38,360 --> 00:42:40,680 SYSTEM THAT FOLKS WILL GRAVITATE 1351 00:42:40,680 --> 00:42:40,840 TO. 1352 00:42:40,840 --> 00:42:48,400 >> RIGHT. 1353 00:42:48,400 --> 00:42:49,360 SHOULD WE GO TO ANOTHER 1354 00:42:49,360 --> 00:42:49,640 QUESTION? 1355 00:42:49,640 --> 00:42:51,840 >> I WAS GOING TO GO TO DR. EGAN 1356 00:42:51,840 --> 00:42:53,280 AS OUR LAST QUESTION. 1357 00:42:53,280 --> 00:42:54,440 >> I WILL BE BRIEF. 1358 00:42:54,440 --> 00:42:56,680 I WAS WONDERING, YOU KNOW, I CAN 1359 00:42:56,680 --> 00:42:58,640 SEE YOUNG INVESTIGATORS BEING 1360 00:42:58,640 --> 00:43:01,720 VERY INCENTIVIZED TO ACCESS THE 1361 00:43:01,720 --> 00:43:03,400 DATABASE, BUT I'M WONDERING 1362 00:43:03,400 --> 00:43:08,840 ABOUT PEOPLE WHO HAVE OLD DATA, 1363 00:43:08,840 --> 00:43:10,720 DO THEY FEEL LIKE WHO OWNS THE 1364 00:43:10,720 --> 00:43:12,480 DATA, WHEN ACTUALLY IT IS 1365 00:43:12,480 --> 00:43:13,960 SHARED, DO THE OWNERS OF THE 1366 00:43:13,960 --> 00:43:15,560 DATA FEEL LIKE THEY ARE 1367 00:43:15,560 --> 00:43:17,760 PROTECTED, OR I ALSO UNDERSTAND 1368 00:43:17,760 --> 00:43:21,200 FROM SOME RESEARCHERS THAT I'VE 1369 00:43:21,200 --> 00:43:23,160 COMMUNICATED WITH THAT THE DATA 1370 00:43:23,160 --> 00:43:25,240 CAN'T LEAVE THEIR STATE, YOU 1371 00:43:25,240 --> 00:43:26,600 KNOW, LIKE ALZHEIMER'S RESEARCH 1372 00:43:26,600 --> 00:43:30,640 ON SCANNING, BRAIN SCANS. 1373 00:43:30,640 --> 00:43:31,520 THEY CAN'T SHARE THEM WITH 1374 00:43:31,520 --> 00:43:33,360 ANYBODY. 1375 00:43:33,360 --> 00:43:34,480 THE STATES LIMIT THEM IN 1376 00:43:34,480 --> 00:43:34,960 SHARING. 1377 00:43:34,960 --> 00:43:36,680 HAVE YOU ADDRESSED SOME OF THAT? 1378 00:43:36,680 --> 00:43:38,720 AND THEN THE OTHER ONE QUICKLY 1379 00:43:38,720 --> 00:43:42,400 IS, ARE YOU THINKING ALSO OF THE 1380 00:43:42,400 --> 00:43:44,600 DATA HAVING PSYCHOMETRIC TOOLS? 1381 00:43:44,600 --> 00:43:47,240 IT'S A BIG GAP IN THE FIELD. 1382 00:43:47,240 --> 00:43:49,480 THERE IS VERY GOOD -- THERE'S A 1383 00:43:49,480 --> 00:43:52,960 LACK OF MEASUREMENTS THAT ARE 1384 00:43:52,960 --> 00:43:54,040 VALID MEASUREMENTS THAT WOULD BE 1385 00:43:54,040 --> 00:43:55,240 IN A DATABASE AND HAVE 1386 00:43:55,240 --> 00:43:55,560 REFERENCES. 1387 00:43:55,560 --> 00:43:57,920 I MEAN, I THINK DATABASES ARE 1388 00:43:57,920 --> 00:44:02,520 EXTREMELY IMPORTANT AND 1389 00:44:02,520 --> 00:44:02,880 CONGRATULATIONS. 1390 00:44:02,880 --> 00:44:04,520 >> THANK YOU, DR. EGAN. 1391 00:44:04,520 --> 00:44:07,360 THE QUESTION ON LIMITATIONS ON 1392 00:44:07,360 --> 00:44:08,480 SHARING, THE WAY THAT THE POLICY 1393 00:44:08,480 --> 00:44:11,000 IS WRITTEN, IT'S VERY CLEAR THAT 1394 00:44:11,000 --> 00:44:12,120 WHILE RESEARCHERS ARE EXPECTED 1395 00:44:12,120 --> 00:44:13,760 TO MAXIMIZE DATA SHARING, IT IS 1396 00:44:13,760 --> 00:44:14,960 ACKNOWLEDGED THAT THERE ARE 1397 00:44:14,960 --> 00:44:18,560 OFTEN LIMITATIONS ON DATA 1398 00:44:18,560 --> 00:44:19,040 SHARING. 1399 00:44:19,040 --> 00:44:20,560 SO IN THE PLAN, RESEARCHERS 1400 00:44:20,560 --> 00:44:23,680 EXPECT TO DESCRIBE AS CLEARLY AS 1401 00:44:23,680 --> 00:44:25,160 POSSIBLE WHAT THOSE LIMITATIONS 1402 00:44:25,160 --> 00:44:26,880 ARE WITH THE SOURCE OF THOSE 1403 00:44:26,880 --> 00:44:28,520 LIMITATIONS ARE, AND JUSTIFY 1404 00:44:28,520 --> 00:44:30,480 THAT TO THE PROGRAM OFFICERS FOR 1405 00:44:30,480 --> 00:44:30,920 REVIEW. 1406 00:44:30,920 --> 00:44:32,680 SO IF THERE IS, FOR EXAMPLE, 1407 00:44:32,680 --> 00:44:34,680 DATA COMING FROM A STATE HEALTH 1408 00:44:34,680 --> 00:44:36,120 FACILITY, THOSE DATA CANNOT 1409 00:44:36,120 --> 00:44:38,080 LEAVE A GIVEN SYSTEM, THAT COULD 1410 00:44:38,080 --> 00:44:39,520 BE DESCRIBED IN THE DATA 1411 00:44:39,520 --> 00:44:41,720 MANAGEMENT AND SHARING PLAN FOR 1412 00:44:41,720 --> 00:44:43,120 REVIEW BY NIH. 1413 00:44:43,120 --> 00:44:45,720 SO THERE IS FLEXIBILITY IN THAT. 1414 00:44:45,720 --> 00:44:48,000 WE DO ENCOURAGE THAT RESEARCHERS 1415 00:44:48,000 --> 00:44:49,440 CONSIDER DATA SHARING AT THE 1416 00:44:49,440 --> 00:44:50,600 OUTSET WHEN ACQUIRING DATASET 1417 00:44:50,600 --> 00:44:52,960 AND SUBMITTING AN APPLICATION 1418 00:44:52,960 --> 00:44:54,840 AND TRY TO WORK WITH DATA THAT 1419 00:44:54,840 --> 00:44:58,160 CAN BE SHARED IN SOME CAPACITY. 1420 00:44:58,160 --> 00:44:59,680 AND YOUR QUESTION ABOUT 1421 00:44:59,680 --> 00:45:00,640 PSYCHOMETRIC TOOLS AND 1422 00:45:00,640 --> 00:45:03,480 MEASUREMENT VALIDATION, 1423 00:45:03,480 --> 00:45:05,200 CURRENTLY THAT'S MORE OF A 1424 00:45:05,200 --> 00:45:06,240 PROGRAM PRIORITY AND OUT OF 1425 00:45:06,240 --> 00:45:07,960 SCOPE FOR OUR OFFICE. 1426 00:45:07,960 --> 00:45:09,600 BUT I DO RECOGNIZE THE 1427 00:45:09,600 --> 00:45:11,680 IMPORTANCE OF IT, AND I CAN SEE 1428 00:45:11,680 --> 00:45:15,280 A SPACE IN WHICH THIS GETS BACK 1429 00:45:15,280 --> 00:45:17,560 TO THE QUESTION FROM DR. ROWITCH 1430 00:45:17,560 --> 00:45:18,080 ABOUT STANDARDS. 1431 00:45:18,080 --> 00:45:19,520 THIS IS A SPACE WHERE WE ARE 1432 00:45:19,520 --> 00:45:21,560 WATCHING, WE ARE ENGAGING AT THE 1433 00:45:21,560 --> 00:45:22,440 WORKSHOP LEVEL, AND LEARNING 1434 00:45:22,440 --> 00:45:23,680 FROM WHAT THE COMMUNITY IS DOING 1435 00:45:23,680 --> 00:45:26,080 SO WE CAN START TO POINT TO 1436 00:45:26,080 --> 00:45:28,160 THESE STANDARDS AND MEASUREMENT 1437 00:45:28,160 --> 00:45:29,640 TOOLS AS RECOMMENDATIONS BUT OF 1438 00:45:29,640 --> 00:45:31,000 COURSE WE CAN'T ENDORSE 1439 00:45:31,000 --> 00:45:31,560 ANYTHING. 1440 00:45:31,560 --> 00:45:32,720 SO IT'S REALLY ABOUT JUST 1441 00:45:32,720 --> 00:45:33,800 KEEPING TRACK OF WHAT'S 1442 00:45:33,800 --> 00:45:34,680 HAPPENING IN THE COMMUNITY, AND 1443 00:45:34,680 --> 00:45:35,600 THAT IS WITHIN THE SCOPE OF OUR 1444 00:45:35,600 --> 00:45:36,960 OFFICE. 1445 00:45:36,960 --> 00:45:38,160 >> THANK YOU. 1446 00:45:38,160 --> 00:45:38,600 >> GREAT. 1447 00:45:38,600 --> 00:45:41,600 I WANT TO THANK EVERYONE FOR AN 1448 00:45:41,600 --> 00:45:43,480 INCREDIBLY RICH DISCUSSION. 1449 00:45:43,480 --> 00:45:45,880 REBECCA, THERE ARE A COUPLE OF 1450 00:45:45,880 --> 00:45:46,920 QUESTIONS AND COMMENTS IN THE 1451 00:45:46,920 --> 00:45:47,440 CHAT BOX. 1452 00:45:47,440 --> 00:45:49,080 WE DON'T HAVE TIME TO ANSWER 1453 00:45:49,080 --> 00:45:52,480 THEM NOW BECAUSE WE NEED TO 1454 00:45:52,480 --> 00:45:54,120 TECHNOLOGICALLY PIVOT TO THE 1455 00:45:54,120 --> 00:45:55,000 CLOSED SESSION. 1456 00:45:55,000 --> 00:45:56,920 BUT IF YOU COULD COPY THOSE 1457 00:45:56,920 --> 00:45:58,120 QUESTIONS AND THEN WE CAN GET 1458 00:45:58,120 --> 00:46:00,560 YOU THE EMAIL ADDRESSES OF THE 1459 00:46:00,560 --> 00:46:01,960 COUNCILMEMBERS SO THAT YOU COULD 1460 00:46:01,960 --> 00:46:03,720 ANSWER THEM INDIVIDUALLY, WOULD 1461 00:46:03,720 --> 00:46:07,400 THAT WORK FOR YOU? 1462 00:46:07,400 --> 00:46:09,800 THIS IS A TOPIC OF GREAT 1463 00:46:09,800 --> 00:46:12,560 INTEREST TO EVERYONE, AND WE 1464 00:46:12,560 --> 00:46:13,560 REALLY THANK YOU FOR COMING 1465 00:46:13,560 --> 00:46:13,960 TODAY. 1466 00:46:13,960 --> 00:46:15,280 WE'RE GOING TO INVITE YOU BACK 1467 00:46:15,280 --> 00:46:17,360 TO GIVE AN UPDATE. 1468 00:46:17,360 --> 00:46:19,840 MAYBE A YEAR FROM NOW, TO SEE 1469 00:46:19,840 --> 00:46:21,920 HOW THINGS ARE GOING. 1470 00:46:21,920 --> 00:46:22,760 ALL RIGHT. 1471 00:46:22,760 --> 00:46:24,840 WITH THAT, WE ARE GOING TO 1472 00:46:24,840 --> 00:00:00,000 CLOSE THE OPEN SESSION.