1
00:00:06,406 --> 00:00:07,307
>> ALL RIGHT.

2
00:00:07,374 --> 00:00:09,275
GOOD AFTERNOON, EVERYONE, AND

3
00:00:09,342 --> 00:00:11,478
WELCOME TO THE FIRST OF OUR

4
00:00:11,544 --> 00:00:13,913
CONCURRENT SESSIONS.

5
00:00:13,980 --> 00:00:16,082
THANK YOU.

6
00:00:16,149 --> 00:00:17,717
THIS IS SESSION NUMBER 3, THE

7
00:00:17,784 --> 00:00:22,655
SESSION ON THE MYCOG PROGRAM.

8
00:00:22,722 --> 00:00:24,057
SO WHAT WE'LL DO TODAY IS I'LL

9
00:00:24,124 --> 00:00:25,358
INTRODUCE EACH OF OUR SPEAKERS

10
00:00:25,425 --> 00:00:27,127
AS THEY COME UP, THEY WILL GIVE

11
00:00:27,193 --> 00:00:28,228
A BRIEF PRESENTATION AND THEN AT

12
00:00:28,294 --> 00:00:29,896
THE END WE'LL HAVE TIME FOR A

13
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QUESTION AND ANSWER PERIOD

14
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ALTOGETHER.

15
00:00:31,664 --> 00:00:32,932
ALL RIGHT.  SO OUR FIRST SPEAKER

16
00:00:32,999 --> 00:00:35,668
TODAY IS LAURA CURTIS FROM

17
00:00:35,735 --> 00:00:36,236
NORTHWESTERN UNIVERSITY, AND

18
00:00:36,302 --> 00:00:37,670
SHE'LL BE TALKING TODAY ABOUT

19
00:00:37,737 --> 00:00:40,173
BARRIERS AND FACILITATORS TO

20
00:00:40,240 --> 00:00:41,908
IMPLEMENTING MYCOG INTO PRIMARY

21
00:00:41,975 --> 00:00:43,543
CARE FOR THE EARLY DETECTION OF

22
00:00:43,610 --> 00:00:45,745
COGNITIVE IMPAIRMENT AND

23
00:00:45,812 --> 00:00:47,714
DEMENTIA, LESSONS FROM THE

24
00:00:47,781 --> 00:00:49,482
TOOLBOX DETECT TRIAL.

25
00:00:49,549 --> 00:00:53,386
THANK YOU.

26
00:00:53,453 --> 00:00:58,758
>> THANK YOU FOR THE

27
00:00:58,825 --> 00:00:59,092
INTRODUCTION.

28
00:00:59,159 --> 00:01:02,796
SO I HAVE NO RELEVANT FINANCIAL

29
00:01:02,862 --> 00:01:03,797
DISCLOSURES, AND FIRST I JUST

30
00:01:03,863 --> 00:01:05,799
WANT TO ACKNOWLEDGE THE TEAM.

31
00:01:05,865 --> 00:01:10,904
MANY OF YOU ARE SITTING HERE IN

32
00:01:10,970 --> 00:01:12,005
THE AUDIENCE.

33
00:01:12,071 --> 00:01:13,740
SO EARLY DETECTION OF COGNITIVE

34
00:01:13,807 --> 00:01:14,774
IMPAIRMENT IS IMPERATIVE.

35
00:01:14,841 --> 00:01:16,843
IT HELPS TO IDENTIFY POTENTIAL

36
00:01:16,910 --> 00:01:20,213
TREATABLE UNDERLYING CONDITIONS

37
00:01:20,280 --> 00:01:21,981
AND PROVIDE SUPPORT SERVICES

38
00:01:22,048 --> 00:01:23,850
WHEN IMPAIRMENT DUE TO -- WHEN

39
00:01:23,917 --> 00:01:26,453
IMPAIRMENT IS DUE TO PROGRESSIVE

40
00:01:26,519 --> 00:01:28,188
CONDITIONS.

41
00:01:28,254 --> 00:01:30,290
HOWEVER, PRIMARY CARE SETTINGS

42
00:01:30,356 --> 00:01:34,160
ARE IDEAL FOR IDENTIFYING CI,

43
00:01:34,227 --> 00:01:35,762
GIVING CLINICIANS FAMILIARITY

44
00:01:35,829 --> 00:01:38,731
WITH THE -- GIVEN CLINICIANS'

45
00:01:38,798 --> 00:01:39,732
FAMILIARITY WITH THE PATIENT AND

46
00:01:39,799 --> 00:01:40,733
REGULAR CONTACT TO MONITOR

47
00:01:40,800 --> 00:01:42,569
CHANGES OVER TIME.

48
00:01:42,635 --> 00:01:44,204
HOWEVER, COGNITIVE IMPAIRMENT

49
00:01:44,270 --> 00:01:46,206
FREQUENTLY GOES UNDETECTED IN

50
00:01:46,272 --> 00:01:50,310
PRIMARY CARE.

51
00:01:50,376 --> 00:01:58,151
IN A 2017 META-ANALYSIS OF 27

52
00:01:58,218 --> 00:02:04,724
STUDIES, OVER 60% THEREOF HAD

53
00:02:04,791 --> 00:02:08,261
671% OF AMBULATORY CARE PATIENTS

54
00:02:08,328 --> 00:02:10,530
IN THE U.S. WITH MCI OR DEMENTIA

55
00:02:10,597 --> 00:02:12,198
SUN DETECTED.

56
00:02:12,265 --> 00:02:13,666
HEALTH RECORD LINKED STRATEGY

57
00:02:13,733 --> 00:02:15,468
FOR THE ROUTINE DETECTION OF

58
00:02:15,535 --> 00:02:16,669
COGNITIVE DECLINE AMONG THE

59
00:02:16,736 --> 00:02:18,137
FIRST PRIMARY CARE SETTINGS.

60
00:02:18,204 --> 00:02:19,939
THIS WAS IN RESPONSE TO THE

61
00:02:20,006 --> 00:02:22,008
LOW-COST DETECTION OF COGNITIVE

62
00:02:22,075 --> 00:02:24,878
DECLINE IN CLINICAL SETTINGS

63
00:02:24,944 --> 00:02:26,412
RFA, AND IN THAT IT INCLUDED A

64
00:02:26,479 --> 00:02:28,147
CALL TO FACILITATE THE

65
00:02:28,214 --> 00:02:30,550
INTEGRATION OF ASSESSMENTS INTO

66
00:02:30,617 --> 00:02:31,985
EXISTING HEALTHCARE SECRETARIES,

67
00:02:32,051 --> 00:02:33,820
PARTICULARLY FOR COGNITIVE

68
00:02:33,887 --> 00:02:36,556
TESTING REQUIREMENT FOR MEDICARE

69
00:02:36,623 --> 00:02:39,959
ANNUAL WELLNESS VISITS.

70
00:02:40,026 --> 00:02:42,962
SO THIS FIT WELL INTO THE

71
00:02:43,029 --> 00:02:45,031
PRIMARY CARE PARADIGM DR. WOLF

72
00:02:45,098 --> 00:02:49,168
SHOWED IN HIS TALK THIS MORNING,

73
00:02:49,235 --> 00:02:51,137
IF HAD THIS LOOKS FAMILIAR.

74
00:02:51,204 --> 00:02:53,206
SO THE TOOLBOX DETECT PARADIGM

75
00:02:53,273 --> 00:02:58,244
FOLLOWS THIS LOWER PATH HERE.

76
00:02:58,311 --> 00:03:00,213
SO THE PATIENTS WHO WERE 65 AND

77
00:03:00,280 --> 00:03:01,748
OLDER BEING SEEN FOR ANNUAL

78
00:03:01,814 --> 00:03:02,949
WELLNESS VISIT, THEY

79
00:03:03,016 --> 00:03:07,554
AUTOMATICALLY GET THE MYCOG

80
00:03:07,620 --> 00:03:07,887
ASSESSMENT.

81
00:03:07,954 --> 00:03:12,258
THEN IF THE ASSESSMENT INDICATES

82
00:03:12,325 --> 00:03:14,227
IMPAIRMENT, A STANDARD PROTOCOL

83
00:03:14,294 --> 00:03:15,328
FOR CLINICAL ACTION, AND I'LL

84
00:03:15,395 --> 00:03:17,397
GET INTO SOME MORE DETAILS ABOUT

85
00:03:17,463 --> 00:03:20,033
THIS AS I GO ON.

86
00:03:20,099 --> 00:03:26,940
SO THE MYCOG ASSESSMENT CONTAINT

87
00:03:27,006 --> 00:03:29,342
IS iPAD BASED, AS YOU KNOW

88
00:03:29,409 --> 00:03:31,210
ALREADY, AND CONTAINS

89
00:03:31,277 --> 00:03:33,179
SELF-ADMINISTERED ADAPTED

90
00:03:33,246 --> 00:03:34,814
VERSIONS OF THE DID HE MEN SHALL

91
00:03:34,881 --> 00:03:36,583
CHANGE CARD SORT AND PICTURE

92
00:03:36,649 --> 00:03:38,685
SEQUENCE MEMORY FROM THE NIH

93
00:03:38,751 --> 00:03:39,886
TOOLBOX VERSION 2.

94
00:03:39,953 --> 00:03:43,489
SO ADAPTATIONS WE MADE WERE BOTH

95
00:03:43,556 --> 00:03:45,458
TO MAKE THEM SELF-ADMINISTERED

96
00:03:45,525 --> 00:03:47,093
TO REDUCE THE PICTURE SEQUENCE

97
00:03:47,160 --> 00:03:48,962
MEMORY FROM TWO TRIALS TO ONE TO

98
00:03:49,028 --> 00:03:50,797
SHORTEN IT, AND THEN WE ALSO

99
00:03:50,863 --> 00:03:52,665
ADDED NEW STIMULI TO MAKE IT

100
00:03:52,732 --> 00:03:54,968
DIFFERENT AND REDUCED THE NUMBER

101
00:03:55,034 --> 00:03:59,138
OF PICTURES FROM FIFTEEN TO

102
00:03:59,205 --> 00:03:59,772
TWELVE.

103
00:03:59,839 --> 00:04:04,677
SO WE WORKED CLOSELY WITH THE

104
00:04:04,744 --> 00:04:05,378
NORTHWESTERN UNIVERSITY TECH

105
00:04:05,445 --> 00:04:07,246
TEAM AND NORTHWESTERN MEDICINE

106
00:04:07,313 --> 00:04:08,681
EPIC TEAM TO BE ABLE TO

107
00:04:08,748 --> 00:04:11,985
INTEGRATE THIS INTO CLINIC

108
00:04:12,051 --> 00:04:13,653
WORKFLOW.

109
00:04:13,720 --> 00:04:15,154
THE MYCOG APP WAS DESIGNED TO

110
00:04:15,221 --> 00:04:16,823
RUN THE ASSESSMENT AND ALSO JUST

111
00:04:16,889 --> 00:04:19,092
TO INTERPRETED IT WERE IN THE

112
00:04:19,158 --> 00:04:20,226
MYCOG APP.

113
00:04:20,293 --> 00:04:22,328
THE ASSESSMENT IS ACTIVATED BY A

114
00:04:22,395 --> 00:04:25,164
DARR CODE THAT'S UNIQUE TO EACH

115
00:04:25,231 --> 00:04:26,399
PATIENT, WHICH AUTOMATICALLY

116
00:04:26,466 --> 00:04:27,700
SHOWS UP WHEN THEY ARE SCHEDULED

117
00:04:27,767 --> 00:04:30,970
FOR AN ANNUAL WELLNESS VISIT.

118
00:04:31,037 --> 00:04:33,272
IT IS TYPICALLY SCANNED BY THE

119
00:04:33,339 --> 00:04:34,674
MEDICAL ASSISTANT WHEN ROOMING

120
00:04:34,741 --> 00:04:36,342
USING THE iPAD AND THEN IT'S

121
00:04:36,409 --> 00:04:39,512
HANDED TO THE PATIENTS TO

122
00:04:39,579 --> 00:04:39,879
SELF-ADMINISTER.

123
00:04:39,946 --> 00:04:41,581
ONCE COMPLETED, THE RESULTS

124
00:04:41,648 --> 00:04:42,782
AUTOMATICALLY POPULATE INTO THE

125
00:04:42,849 --> 00:04:45,318
CHART, AND THEN IF THEY ARE

126
00:04:45,385 --> 00:04:46,653
IMPAIRED, THE PHYSICIANS RECEIVE

127
00:04:46,719 --> 00:04:49,389
A BEST PRACTICE ADVISORY WITH A

128
00:04:49,455 --> 00:04:51,924
SMART SET THAT FACILITATES NEXT

129
00:04:51,991 --> 00:04:52,825
STEPS FOR EVALUATION.

130
00:04:52,892 --> 00:04:54,227
AND THIS INCLUDES THE ABILITY TO

131
00:04:54,293 --> 00:04:57,397
ORDER LABS FOR THEIR TESTING,

132
00:04:57,463 --> 00:04:58,498
REFERRALS, AS WELL AS OTHER

133
00:04:58,564 --> 00:05:03,302
RESOURCES TO SHARE WITH THE

134
00:05:03,369 --> 00:05:04,170
PATIENT.

135
00:05:04,237 --> 00:05:05,805
THE MAIN OBJECTIVES OF THE

136
00:05:05,872 --> 00:05:07,373
TOOLBOX TRIAL WERE TO EVALUATE

137
00:05:07,440 --> 00:05:09,442
THE EFFECTIVENESS OF THE MYCOG

138
00:05:09,509 --> 00:05:12,078
PARADIGM COMPARED TO ENHANCE

139
00:05:12,145 --> 00:05:13,579
EQUAL CARE TO DETECTED TIMELY

140
00:05:13,646 --> 00:05:14,914
DETECTION OF COGNITIVE DECLINE

141
00:05:14,981 --> 00:05:16,115
AND SUBSEQUENT CARE MANAGEMENT

142
00:05:16,182 --> 00:05:21,087
AND ALSO TO INVESTIGATE THE

143
00:05:21,154 --> 00:05:22,655
FIDELITY AND IDENTIFY ANY

144
00:05:22,722 --> 00:05:24,090
PATIENT HEALTHCARE GIVER OR

145
00:05:24,157 --> 00:05:25,725
HEALTHCARE PROVIDER SYSTEM

146
00:05:25,792 --> 00:05:28,795
BARRIERS WITH OPTIMAL

147
00:05:28,861 --> 00:05:30,029
IMPLEMENTATION.

148
00:05:30,096 --> 00:05:32,398
SO IT IS A PRACTICE RANDOMIZED

149
00:05:32,465 --> 00:05:33,499
PROGRESSMATIC TRIAL WHERE

150
00:05:33,566 --> 00:05:35,234
PRIMARY CARE CLINICS ARE

151
00:05:35,301 --> 00:05:37,670
RANDOMIZED TO TOOLBOX DETECT OR

152
00:05:37,737 --> 00:05:41,708
USUAL CARE, WE PLAN TO ENROLL 40

153
00:05:41,774 --> 00:05:43,009
CLINICS THROUGHOUT NORTHWESTERN

154
00:05:43,076 --> 00:05:45,011
MEDICINE HEALTHCARE SYSTEM.

155
00:05:45,078 --> 00:05:46,746
AT THE END OF THE TRIAL, WE WILL

156
00:05:46,813 --> 00:05:49,348
BE COMPARING THE RATES OF

157
00:05:49,415 --> 00:05:50,783
DETECTED AND/OR DIAGNOSED

158
00:05:50,850 --> 00:05:52,118
COGNITIVE IMPAIRMENT AND RATES

159
00:05:52,185 --> 00:05:56,355
OF COGNITIVE TESTING AND THAT

160
00:05:56,422 --> 00:05:59,425
WOULD BE USING DATA FROM

161
00:05:59,492 --> 00:06:01,994
NORTHWESTERN MEDICINE'S

162
00:06:02,061 --> 00:06:03,396
ELECTRONIC MEDICINE DATA

163
00:06:03,463 --> 00:06:03,696
WAREHOUSE.

164
00:06:03,763 --> 00:06:06,132
SINCE THE TRIAL IS STILL ACTIVE,

165
00:06:06,199 --> 00:06:08,701
THIS SYSTEM FOCUSES ON THE

166
00:06:08,768 --> 00:06:12,472
FIDELITY OF TOOLBOX DETECT ANDS

167
00:06:12,538 --> 00:06:13,806
FEEDBACK FROM PRIMARY CARE

168
00:06:13,873 --> 00:06:14,440
CLINICIANS, PRACTICE MANAGERS

169
00:06:14,507 --> 00:06:16,676
AND MEDICAL ASSISTANTS BOTH

170
00:06:16,743 --> 00:06:17,510
REGARDING PARTICIPATION IN THE

171
00:06:17,577 --> 00:06:20,480
TRIAL AND FOR ITS CONTINUED USE.

172
00:06:20,546 --> 00:06:21,814
SO CURRENTLY WE HAVE 30

173
00:06:21,881 --> 00:06:24,217
PRACTICES ENROLLED, 15 IN EACH

174
00:06:24,283 --> 00:06:26,285
ARM.

175
00:06:26,352 --> 00:06:28,588
OVER 17,000 PATIENTS WITH ANNUAL

176
00:06:28,654 --> 00:06:30,556
WELLNESS VISITS OCCURRING IN THE

177
00:06:30,623 --> 00:06:36,062
PARTICIPATING CLINICS.

178
00:06:36,129 --> 00:06:38,030
AFTER A FEW MONTHS OF PILOTING

179
00:06:38,097 --> 00:06:40,333
IN ONE CLINIC, MORE CLINICS WERE

180
00:06:40,399 --> 00:06:42,368
ADDED IN EARLY 2023, AND WE'VE

181
00:06:42,435 --> 00:06:45,037
BEEN ENROLLING AT A CONSISTENT

182
00:06:45,104 --> 00:06:47,640
PACE SINCE.

183
00:06:47,707 --> 00:06:49,776
MYCOG HAS BEEN COMPLETED IN 72%

184
00:06:49,842 --> 00:06:52,678
OF THE ANNUAL WELLNESS VISITS,

185
00:06:52,745 --> 00:06:55,782
AND COMPLETION RATES VARY WIDELY

186
00:06:55,848 --> 00:06:58,618
BY CLINICIANS FROM 38% TO 90%,

187
00:06:58,684 --> 00:07:00,486
AND I'LL GET INTO SOME POTENTIAL

188
00:07:00,553 --> 00:07:04,323
REASONS FOR THIS.

189
00:07:04,390 --> 00:07:06,626
SO IN TERMS OF FACILITATORS, THE

190
00:07:06,692 --> 00:07:09,328
USE OF AN iPAD WAS INTRIGUING

191
00:07:09,395 --> 00:07:11,330
FOR MANY CLINICIANS, AND THEY

192
00:07:11,397 --> 00:07:12,298
THOUGHT OF DIFFERENT WAYS THAT

193
00:07:12,365 --> 00:07:16,502
THEY COULD ALSO USE THE IPADS TO

194
00:07:16,569 --> 00:07:19,005
HELP THEIR WORKFLOW.

195
00:07:19,071 --> 00:07:21,073
THE MA'S LIKED THE SEAMLESS

196
00:07:21,140 --> 00:07:23,476
AUTOMATION OF COGNITIVE TESTING

197
00:07:23,543 --> 00:07:24,777
DATA COLLECTION WITHOUT THE NEED

198
00:07:24,844 --> 00:07:26,546
TO ADMINISTER THE TESTS

199
00:07:26,612 --> 00:07:29,282
THEMSELVES AND THEN ENTER THE

200
00:07:29,348 --> 00:07:31,918
RESULTS INTO THE CHART, AS THEY

201
00:07:31,984 --> 00:07:33,252
WERE CURRENTLY DOING WITH PENCIL

202
00:07:33,319 --> 00:07:34,220
AND PAPER TESTS.

203
00:07:34,287 --> 00:07:37,390
SO BEING ABLE TO SCAN THE

204
00:07:37,456 --> 00:07:38,825
BARCODE AND HANDING IT TO THE

205
00:07:38,891 --> 00:07:40,159
PATIENT TO COMPLETE THEMSELVES

206
00:07:40,226 --> 00:07:41,894
WOULD ALLOW THEM TO COMPLETE

207
00:07:41,961 --> 00:07:43,529
OTHER TASKS DURING THAT TIME,

208
00:07:43,596 --> 00:07:48,267
MAKING THE VISITS MORE

209
00:07:48,334 --> 00:07:49,168
EFFICIENT.

210
00:07:49,235 --> 00:07:50,203
CLINICIANS WERE ALSO INTERESTED

211
00:07:50,269 --> 00:07:54,040
IN A MORE RIGOROUS TEST AND THE

212
00:07:54,106 --> 00:07:56,209
POTENTIAL TO REDUCE

213
00:07:56,275 --> 00:07:56,576
FALSE-POSITIVES.

214
00:07:56,642 --> 00:08:00,746
IT'S IMPORTANT TO NOTE THAT IN

215
00:08:00,813 --> 00:08:02,048
CREATING -- FOR COGNITIVE

216
00:08:02,114 --> 00:08:04,350
IMPAIRMENT WE FAVORED

217
00:08:04,417 --> 00:08:05,451
SPECIFICITY OVER SENSITIVITY

218
00:08:05,518 --> 00:08:08,187
BASED ON EARLY WORK WHERE

219
00:08:08,254 --> 00:08:09,922
CLINICIANS INDICATED THAT

220
00:08:09,989 --> 00:08:11,123
FALSE-POSITIVES WOULD BE MORE

221
00:08:11,190 --> 00:08:13,192
DETRIMENTAL TO PATIENTS THAN

222
00:08:13,259 --> 00:08:16,162
MISSING IMPAIRMENT BEFORE THE

223
00:08:16,229 --> 00:08:17,496
FOLLOWING YEAR.

224
00:08:17,563 --> 00:08:20,633
IN CASES WHERE KIND OF

225
00:08:20,700 --> 00:08:21,500
IMPAIRMENT -- WHERE COGNITIVE

226
00:08:21,567 --> 00:08:23,469
IMPAIRMENT WAS FOUND, THE

227
00:08:23,536 --> 00:08:26,005
INCLUSION OF EXPLICIT CLINICAL

228
00:08:26,072 --> 00:08:29,842
SUPPORT WAS HIGHLY VALUABLE.

229
00:08:29,909 --> 00:08:31,711
SO WHILE TECHNOLOGY USE IS

230
00:08:31,777 --> 00:08:33,112
INCREASING DRAMATICALLY IN OLDER

231
00:08:33,179 --> 00:08:34,547
ADULTS, SOME ARE STILL LESS

232
00:08:34,614 --> 00:08:35,982
COMFORTABLE USING TECHNOLOGY IF

233
00:08:36,048 --> 00:08:37,516
THEY AREN'T AS EXPERIENCED.

234
00:08:37,583 --> 00:08:39,886
THIS CAUSED SOME PATIENTS, A FEW

235
00:08:39,952 --> 00:08:41,320
PATIENTS TO REFUSE AND FOR

236
00:08:41,387 --> 00:08:44,156
OTHERS IT JUST TOOK THE MA JUST

237
00:08:44,223 --> 00:08:45,591
A LITTLE MORE TIME TO HELP

238
00:08:45,658 --> 00:08:47,894
ORIENT THOUGH THE iPAD.

239
00:08:47,960 --> 00:08:50,396
HOWEVER, ONCE THEY BEGAN THE

240
00:08:50,463 --> 00:08:52,031
ASSESSMENT, PEOPLE WERE ABLE TO

241
00:08:52,098 --> 00:08:55,234
COMPLETE IT WITHOUT ANY PROBLEM.

242
00:08:55,301 --> 00:08:57,169
SO THE TIME TO COMPLETE THE

243
00:08:57,236 --> 00:08:58,738
ASSESSMENT CAN ALSO VARY

244
00:08:58,804 --> 00:08:59,272
GREATLY.

245
00:08:59,338 --> 00:09:01,674
WHILE THE AVERAGE OF TEN MINUTES

246
00:09:01,741 --> 00:09:03,075
IS ACCEPTABLE TO MOST

247
00:09:03,142 --> 00:09:04,610
CLINICIANS, THOSE WHO TAKE

248
00:09:04,677 --> 00:09:06,579
LONGER MAY NOT FINISH BY THE

249
00:09:06,646 --> 00:09:09,882
TIME THE PHYSICIAN COMES THE

250
00:09:09,949 --> 00:09:14,353
ROOM, AND THAT WOULD DISRUPT

251
00:09:14,420 --> 00:09:14,687
WORKFLOW.

252
00:09:14,754 --> 00:09:17,623
THE CLINICIANS ALSO USE THE EHR

253
00:09:17,690 --> 00:09:18,958
QUITE DIFFERENTLY.

254
00:09:19,025 --> 00:09:22,328
OUR PARADIGM WAS ADDED TO THE

255
00:09:22,395 --> 00:09:23,529
STANDARD RECOMMENDED ANNUAL

256
00:09:23,596 --> 00:09:25,831
WELLNESS VISIT TEMPLATE, BUT NOT

257
00:09:25,898 --> 00:09:27,033
EVERYONE USES IT.

258
00:09:27,099 --> 00:09:28,834
SO WHILE THE RESULTS ARE STILL

259
00:09:28,901 --> 00:09:30,036
AVAILABLE IF THEY DIDN'T USE

260
00:09:30,102 --> 00:09:32,204
THAT TEMPLATE, WE NEEDED TO

261
00:09:32,271 --> 00:09:33,406
CREATE A WORKAROUND TO TRAIN

262
00:09:33,472 --> 00:09:34,974
THEM ON HOW TO FIND IT, AND

263
00:09:35,041 --> 00:09:36,509
SINCE IT WASN'T AS

264
00:09:36,575 --> 00:09:37,944
STRAIGHTFORWARD, IT COULD

265
00:09:38,010 --> 00:09:41,647
POTENTIALLY AFFECT USE.

266
00:09:41,714 --> 00:09:44,417
SO BASED ON THESE FACILITATORS

267
00:09:44,483 --> 00:09:46,552
AND BARRIERS, ADOPTION AND USE

268
00:09:46,619 --> 00:09:47,586
HAS BEEN VARIABLE.

269
00:09:47,653 --> 00:09:49,789
BOTH PATIENT AND PRACTICE LEVEL

270
00:09:49,855 --> 00:09:53,059
BARRIERS CONTRIBUTE TO THIS

271
00:09:53,125 --> 00:09:53,359
VARIABILITY.

272
00:09:53,426 --> 00:09:55,895
THIS IS NOT A ONE-SIZE-FITS-ALL

273
00:09:55,962 --> 00:09:57,096
APPROACH, EVEN WITHIN CLINICS,

274
00:09:57,163 --> 00:09:59,065
AND IT ALLOWS FOR MORE TAILORED

275
00:09:59,131 --> 00:10:01,600
WORKFLOW TO OPT MIEDZ SCREENING

276
00:10:01,667 --> 00:10:03,769
IN CLINICAL SETTINGS -- TO

277
00:10:03,836 --> 00:10:09,342
OPTIMIZE SCREENING IN CLINICAL

278
00:10:09,408 --> 00:10:16,515
SETTINGS.

279
00:10:16,582 --> 00:10:17,149
ALL RIGHT.

280
00:10:17,216 --> 00:10:18,117
THANK YOU.

281
00:10:18,184 --> 00:10:20,086
OUR NEXT SPEAKER IS MORGAN

282
00:10:20,152 --> 00:10:21,220
BONHAM FROM NORTHWESTERN

283
00:10:21,287 --> 00:10:22,154
UNIVERSITY, AND SHE'LL BE

284
00:10:22,221 --> 00:10:23,889
TALKING WITH US TODAY ABOUT

285
00:10:23,956 --> 00:10:25,424
PRIMARY CARE DETECTION OF

286
00:10:25,491 --> 00:10:28,127
COGNITIVE IMPAIRMENT, LEVERAGING

287
00:10:28,194 --> 00:10:29,795
HEALTH AND CONSUMER TECHNOLOGIES

288
00:10:29,862 --> 00:10:31,464
IN UNDERSERVED U.S. COMMUNITIES,

289
00:10:31,530 --> 00:10:33,966
THE PROTOCOL FOR A PRAGMATIC

290
00:10:34,033 --> 00:10:34,633
RANDOMIZED CONTROLLED TRIAL OF

291
00:10:34,700 --> 00:10:37,536
THE MYCOG PARADIGM.

292
00:10:37,603 --> 00:10:47,780
THANK YOU.

293
00:10:52,418 --> 00:10:53,019
>> ALL RIGHT.

294
00:10:53,085 --> 00:10:55,421
HI, EVERYBODY, MY NAME IS MORGAN

295
00:10:55,488 --> 00:10:55,654
BONHAM.

296
00:10:55,721 --> 00:10:57,590
I'M A CLINICAL RESEARCH

297
00:10:57,656 --> 00:11:00,026
ASSOCIATE AT NORTHWESTERN

298
00:11:00,092 --> 00:11:01,427
UNIVERSITY'S FEINBERG SCHOOL OF

299
00:11:01,494 --> 00:11:03,729
MEDICINE AND I'M SITUATED WITHIN

300
00:11:03,796 --> 00:11:08,701
THE CENTER OF APPLIED RESEARCH

301
00:11:08,768 --> 00:11:10,403
ON AGING, BEEN WORK WITH THIS

302
00:11:10,469 --> 00:11:12,071
GROUP SINCE 2016, PRIMARILY

303
00:11:12,138 --> 00:11:12,972
INVOLVED IN LEADING RESEARCH

304
00:11:13,039 --> 00:11:14,140
PROJECTS FROM OUR COGNITIVE

305
00:11:14,206 --> 00:11:15,508
AGING PROGRAM.

306
00:11:15,574 --> 00:11:16,642
TODAY I'M EXCITED TO HAVE THE

307
00:11:16,709 --> 00:11:18,711
OPPORTUNITY TO INTRODUCE THE

308
00:11:18,778 --> 00:11:21,147
MYCOG TRIAL TO YOU ALL.

309
00:11:21,213 --> 00:11:23,315
FIRST OF ALL, I HAVE NO

310
00:11:23,382 --> 00:11:26,185
FINANCIAL DISCLOSURES TO SHARE.

311
00:11:26,252 --> 00:11:27,586
AND NEXT, I DO WANT TO

312
00:11:27,653 --> 00:11:28,587
ACKNOWLEDGE THE STUDY TEAM.

313
00:11:28,654 --> 00:11:30,423
MANY OF YOU ARE IN THE ROOM

314
00:11:30,489 --> 00:11:30,656
TODAY.

315
00:11:30,723 --> 00:11:32,691
THESE INDIVIDUALS ARE FROM THE

316
00:11:32,758 --> 00:11:34,060
DIVISION OF GENERAL INTERNAL

317
00:11:34,126 --> 00:11:35,795
MEDICINE AND MEDICAL SOCIAL

318
00:11:35,861 --> 00:11:37,229
SCIENCES AT NORTHWESTERN, AND

319
00:11:37,296 --> 00:11:38,964
THEN I ALSO WANT TO ACKNOWLEDGE

320
00:11:39,031 --> 00:11:41,367
OUR COMMUNITY PARTNER O STREET

321
00:11:41,434 --> 00:11:42,902
HEALTH WHO I WILL DEFINITELY

322
00:11:42,968 --> 00:11:44,003
INTRODUCE IN FURTHER DETAIL

323
00:11:44,070 --> 00:11:46,305
LATER ON IN THE PRESENTATION --

324
00:11:46,372 --> 00:11:48,407
OAK STREET HEALTH, JUST FOR

325
00:11:48,474 --> 00:11:49,842
THEIR MANY CONTRIBUTION TO SAY

326
00:11:49,909 --> 00:11:51,143
THE TRIAL THUS FAR.

327
00:11:51,210 --> 00:11:53,546
SO FIRST OF ALL, A FEW OF THESE

328
00:11:53,612 --> 00:11:54,880
SLIDES MAY LOOK FAMILIAR TO YOU,

329
00:11:54,947 --> 00:11:56,615
BUT I WANT TO REMIND YOU ALL

330
00:11:56,682 --> 00:11:58,150
FROM DR. WOLF'S PRESENTATION

331
00:11:58,217 --> 00:11:59,151
FROM EARLIER THIS MORNING THAT

332
00:11:59,218 --> 00:12:01,554
THIS RESEARCH IS SUPPORTED BY

333
00:12:01,620 --> 00:12:02,588
THE NATIONAL INSTITUTE OF

334
00:12:02,655 --> 00:12:03,856
NEUROLOGICAL DISORDERS AND

335
00:12:03,923 --> 00:12:05,491
STROKE AND IS BEING CONDUCTED AS

336
00:12:05,558 --> 00:12:07,493
PART OF THE CONSORTIUM FOR

337
00:12:07,560 --> 00:12:08,928
DETECTING COGNITIVE IMPAIRMENT

338
00:12:08,994 --> 00:12:10,129
INCLUDING DEMENTIA WHICH I'LL

339
00:12:10,196 --> 00:12:13,399
REFER TO AS DETECTCID AND THESE

340
00:12:13,466 --> 00:12:18,571
ARE COLLABORATORS FROM

341
00:12:18,637 --> 00:12:20,406
NORTHWESTERN.

342
00:12:20,473 --> 00:12:23,275
SO PUBLISHED HERE COLLEAGUES

343
00:12:23,342 --> 00:12:26,112
SEEN UP AS KATE'S GROUP HAVE

344
00:12:26,178 --> 00:12:27,113
HIGHLIGHTED DISPARITIES OF

345
00:12:27,179 --> 00:12:28,848
CONCERN OF TIMELY DETECTION AND

346
00:12:28,914 --> 00:12:30,516
FOLLOW-UP ESPECIALLY AMONG

347
00:12:30,583 --> 00:12:32,618
ASIAN, BLACK AND HISPANIC

348
00:12:32,685 --> 00:12:32,852
ADULTS.

349
00:12:32,918 --> 00:12:36,288
WITH THE STARTUP CONSORTIUM IN

350
00:12:36,355 --> 00:12:37,656
2017 UNTIL PRESENT A HIGH

351
00:12:37,723 --> 00:12:39,525
PRIORITY OF DETECT CID HAS BEEN

352
00:12:39,592 --> 00:12:41,494
TO DEVELOP TOOLS THAT ARE

353
00:12:41,560 --> 00:12:42,461
SUITABLE FOR PRIMARY CARE

354
00:12:42,528 --> 00:12:44,663
SETTINGS THAT WILL INCREASE THE

355
00:12:44,730 --> 00:12:47,733
FREQUENCY OF DETECTING COGNITIVE

356
00:12:47,800 --> 00:12:50,903
IMPAIRMENT AND IMPROVED

357
00:12:50,970 --> 00:12:51,203
EVALUATIONS.

358
00:12:51,270 --> 00:12:53,205
SO HERE I WANTED TO HIGHLIGHT

359
00:12:53,272 --> 00:12:54,874
WHAT WAS INCLUDED IN THE RFA AND

360
00:12:54,940 --> 00:12:56,408
WHAT SPECIFICALLY THE TRIAL

361
00:12:56,475 --> 00:12:59,011
SEEKS TO RESPOND TO, WHICH IS TO

362
00:12:59,078 --> 00:13:01,647
ADDRESS THE UNMET NEED TO DETECT

363
00:13:01,714 --> 00:13:03,516
COGNITIVE IMPAIRMENT INCLUDING

364
00:13:03,582 --> 00:13:05,251
DEMENTIA IN LARGE AND DIVERSE

365
00:13:05,317 --> 00:13:06,986
POPULATIONS SEEN IN PRIMARY CARE

366
00:13:07,052 --> 00:13:08,654
ACROSS THE U.S., AND THIS IS NOT

367
00:13:08,721 --> 00:13:10,156
JUST WHEN A PATIENT HAS A

368
00:13:10,222 --> 00:13:11,924
CONCERN, BUT ALSO WHEN A

369
00:13:11,991 --> 00:13:13,225
RELATIVE, CAREGIVER OR MEDICAL

370
00:13:13,292 --> 00:13:14,860
PROVIDER HAS A CONCERN.

371
00:13:14,927 --> 00:13:17,396
SO THIS TRIAL HAS TO MEET THREE

372
00:13:17,463 --> 00:13:18,464
MAJOR REQUIREMENTS, AND THIS IS

373
00:13:18,531 --> 00:13:21,100
THAT IT MUST BE IMPLEMENTED IN

374
00:13:21,167 --> 00:13:22,635
HEALTH DISSPAR AT POPULATIONS,

375
00:13:22,701 --> 00:13:25,804
IT MUST BE INTEGRATED INTO THE

376
00:13:25,871 --> 00:13:28,007
EMR AND MUST PROVIDE TURNKEY

377
00:13:28,073 --> 00:13:29,208
CLINICAL RECOMMENDATIONS.

378
00:13:29,275 --> 00:13:30,809
SO IN REGARDS TO THE CONSORTIUM,

379
00:13:30,876 --> 00:13:34,680
WE ARE NOW IN EFFECT CID TWO.

380
00:13:34,747 --> 00:13:36,649
-- DETECT CID II.

381
00:13:36,715 --> 00:13:38,384
THE GOALS OF THE MYCOG TRIAL ARE

382
00:13:38,450 --> 00:13:39,785
TO INCORPORATE MYCOG INTO A

383
00:13:39,852 --> 00:13:40,819
DIFFERENT EHR.

384
00:13:40,886 --> 00:13:43,422
SO WE'VE DONE THIS WITH EPIC

385
00:13:43,489 --> 00:13:44,623
WITH NORTHWESTERN MEDICINE.

386
00:13:44,690 --> 00:13:46,825
WITH EPIC BEING USED AT MANY

387
00:13:46,892 --> 00:13:48,561
LARGE HEALTH SMEDZ, WE WANTED TO

388
00:13:48,627 --> 00:13:50,396
PIVOT PLATFORMS USED MORE

389
00:13:50,462 --> 00:13:53,032
COMMONLY IN COMMUNITY HEALTH

390
00:13:53,098 --> 00:13:53,365
CENTERS.

391
00:13:53,432 --> 00:13:55,134
OUR STRATEGY IS TO BE

392
00:13:55,201 --> 00:13:58,204
IMPLEMENTED IN LATINO AND BLACK

393
00:13:58,270 --> 00:14:01,907
COMMUNITIES, SO -- WHO BEAR A

394
00:14:01,974 --> 00:14:04,310
DISPROPORTIONATE BURDEN OF

395
00:14:04,376 --> 00:14:09,782
DEMENTIA AND LOWER DETECTION ANY

396
00:14:09,848 --> 00:14:10,449
COGNITIVE DIAGNOSIS.

397
00:14:10,516 --> 00:14:14,520
WE WANT TO STUDY IMPLEMENTATION.

398
00:14:14,587 --> 00:14:20,092
SO THE MYCOG ASSESSMENT IS

399
00:14:20,159 --> 00:14:23,829
AVAILABLE, IT'S DCCS PFM THAT

400
00:14:23,896 --> 00:14:25,231
MISS CURTIS EXPLAINED TO YOU

401
00:14:25,297 --> 00:14:26,999
JUST A MOMENT AGO, IT CAN BE

402
00:14:27,066 --> 00:14:28,734
COMPLETED IN ENGLISH OR IN

403
00:14:28,801 --> 00:14:30,269
SPANISH, AND SPANISH IS A NEW

404
00:14:30,336 --> 00:14:31,036
COMPONENT FOR THE TRIAL.

405
00:14:31,103 --> 00:14:33,772
SO LANGUAGE IS SIMPLY SELECTED

406
00:14:33,839 --> 00:14:35,307
BY THE CLINICIAN PRIOR TO

407
00:14:35,374 --> 00:14:36,475
ADMINISTRATION, AND IT'S BASED

408
00:14:36,542 --> 00:14:38,277
OFF THE PATIENT'S PREFERRED

409
00:14:38,344 --> 00:14:38,544
LANGUAGE.

410
00:14:38,611 --> 00:14:40,145
IT WAS VERY IMPORTANT FOR US TO

411
00:14:40,212 --> 00:14:41,647
PRIORITIZE MAKING MYCOG

412
00:14:41,714 --> 00:14:43,415
AVAILABLE IN SPANISH, AS THIS IS

413
00:14:43,482 --> 00:14:45,384
JUST ONE STEP TOWARDS EXPANDING

414
00:14:45,451 --> 00:14:48,420
THE UTILITY OF MYCOG IN PRIMARY

415
00:14:48,487 --> 00:14:50,289
CARE SETTINGS AND OUR COMMUNITY

416
00:14:50,356 --> 00:14:51,890
PARTNER ALSO STRONGLY SUPPORTED

417
00:14:51,957 --> 00:14:55,094
OUR EFFORT IN THIS AREA.

418
00:14:55,160 --> 00:14:56,762
SO NOW I WANT TO INTRODUCE OUR

419
00:14:56,829 --> 00:14:58,063
COMMUNITY PARTNER IN MORE

420
00:14:58,130 --> 00:15:00,466
DETAIL, OAK STREET HEALTH.

421
00:15:00,532 --> 00:15:02,635
SO OAK STREET HEALTH IS A

422
00:15:02,701 --> 00:15:04,069
NETWORK OF PRIMARY CARE CENTERS

423
00:15:04,136 --> 00:15:07,206
FOR ADULTS ON MEDICARE WHO ARE

424
00:15:07,273 --> 00:15:10,442
65 PLUS, AND I WANT TO NOTE IN

425
00:15:10,509 --> 00:15:12,311
FEBRUARY THEY WERE PURCHASED WI

426
00:15:12,378 --> 00:15:14,480
CVS HEALTH WHICH IS ONE OF THE

427
00:15:14,546 --> 00:15:16,115
WORLD'S LARGEST HEALTHCARE

428
00:15:16,181 --> 00:15:16,382
COMPANIES.

429
00:15:16,448 --> 00:15:17,983
JUST SO YOU CAN SEE THE SPREAD

430
00:15:18,050 --> 00:15:20,286
HERE, THIS INCLUDES ABOUT 169

431
00:15:20,352 --> 00:15:23,022
MEDICAL CENTERS ACROSS 21

432
00:15:23,088 --> 00:15:24,556
STATES, AND OAK STREET HEALTH

433
00:15:24,623 --> 00:15:28,394
SUPPORTS A DIVERSE POPULATION

434
00:15:28,460 --> 00:15:30,362
STRATEGICALLY LOCATED IN EASY

435
00:15:30,429 --> 00:15:33,198
ACCESS IN HIGH DENSITY RETAIL

436
00:15:33,265 --> 00:15:36,902
LOCATIONS ACROSS THE NATION.

437
00:15:36,969 --> 00:15:38,804
SO HERE I JUST WANTED TO

438
00:15:38,871 --> 00:15:40,105
SPECIFICALLY HIGHLIGHT OUR

439
00:15:40,172 --> 00:15:40,973
PERFORMANCE SITES.

440
00:15:41,040 --> 00:15:42,207
YOU CAN SEE THEM IN GREEN HERE.

441
00:15:42,274 --> 00:15:43,742
SO THERE ARE FIVE STATES

442
00:15:43,809 --> 00:15:44,943
INCLUDED IN THE TRIAL.

443
00:15:45,010 --> 00:15:49,848
IT'S ILLINOIS, MISH GARNTION

444
00:15:49,915 --> 00:15:51,150
PENNSYLVANIA -- MICHIGAN,

445
00:15:51,216 --> 00:15:52,718
PENNSYLVANIA AND THE CAROLINAS.

446
00:15:52,785 --> 00:15:55,454
24 CLINICS, 12 INTERVENTION, 12

447
00:15:55,521 --> 00:15:57,189
CONTROL, AND WITH THE MYCOG

448
00:15:57,256 --> 00:15:59,725
TRIAL WHERE WE'RE EXPANDING TO

449
00:15:59,792 --> 00:16:03,662
LESS URBAN AREAS AND TO STATES

450
00:16:03,729 --> 00:16:05,064
OUTSIDE -- WHICH IS SUPER

451
00:16:05,130 --> 00:16:05,397
EXCITING.

452
00:16:05,464 --> 00:16:06,732
THEN A FEW MORE DETAILS ABOUT

453
00:16:06,799 --> 00:16:08,367
THEIR EHR SPECIFICALLY.

454
00:16:08,434 --> 00:16:11,603
OAK STREET HEALTH USES GREENWAY,

455
00:16:11,670 --> 00:16:13,872
PRIME SUITE AND CANOPY SOFTWARE,

456
00:16:13,939 --> 00:16:15,574
THIS HAS BEEN A REALLY UNIQUE

457
00:16:15,641 --> 00:16:16,342
CHALLENGE EXPINT GRAITION AS

458
00:16:16,408 --> 00:16:17,876
WE'RE WORKING WITH TWO DIFFERENT

459
00:16:17,943 --> 00:16:19,545
SYSTEM INSTEAD OF JUST ONE.

460
00:16:19,611 --> 00:16:21,480
THE SIMPLEST WAY I CAN EXPLAIN

461
00:16:21,547 --> 00:16:22,815
THIS, OUR TECH TEAMS WERE ABLE

462
00:16:22,881 --> 00:16:24,983
TO WORK TOGETHER TO CUSP EYES

463
00:16:25,050 --> 00:16:26,618
INTEGRATION INTO CANOPY WHICH

464
00:16:26,685 --> 00:16:29,154
THEN REFLECTS INTO GREENWAY.

465
00:16:29,221 --> 00:16:31,390
SO THESE TWO SYSTEMS ARE ABLE TO

466
00:16:31,457 --> 00:16:34,159
COMMUNICATE WITH ONE ANOTHER.

467
00:16:34,226 --> 00:16:37,329
SO AGAIN, BACK TO THE SAME

468
00:16:37,396 --> 00:16:38,731
WORKFLOW, THIRD TIME TODAY, YOU

469
00:16:38,797 --> 00:16:41,500
CAN SEE THIS WORKFLOW AGAIN,

470
00:16:41,567 --> 00:16:43,502
MISS CURTIS SHOWED EARLIER IN

471
00:16:43,569 --> 00:16:44,436
HER PRESENTATION, BUT I WOULD

472
00:16:44,503 --> 00:16:46,839
LIKE TO NOTE THAT WE CAN DELIVER

473
00:16:46,905 --> 00:16:48,507
MYCOG FOR ANNUAL WELLNESS VISITS

474
00:16:48,574 --> 00:16:50,576
AND FOR ROUTINE VISITS MEETING

475
00:16:50,642 --> 00:16:51,643
ANNUAL WELLNESS VISIT

476
00:16:51,710 --> 00:16:53,979
REQUIREMENTS AND ALSO THERAPY

477
00:16:54,046 --> 00:16:55,280
CONCERNS, BUT WHAT I REALLY WANT

478
00:16:55,347 --> 00:16:57,449
TO FOCUS ON IS THE DIFFERENCE

479
00:16:57,516 --> 00:16:58,884
BETWEEN CLINICAL WORKFLOW

480
00:16:58,951 --> 00:16:59,551
ESPECIALLY WHEN THERE ARE

481
00:16:59,618 --> 00:17:00,319
POSITIVE RESULTS.

482
00:17:00,386 --> 00:17:02,287
SO I'M JUST GOING TO FEED THAT

483
00:17:02,354 --> 00:17:03,756
AWAY AND INTRODUCE YOU TO THIS A

484
00:17:03,822 --> 00:17:05,023
LITTLE BIT MORE.

485
00:17:05,090 --> 00:17:06,425
OAK STREAM HEALTH HAS THE

486
00:17:06,492 --> 00:17:08,093
CAPABILITY TO REFER PATIENTS TO

487
00:17:08,160 --> 00:17:10,062
A SPECIALIST OUTSIDE OF THE

488
00:17:10,129 --> 00:17:11,930
CENTER, AND THIS IS CALLED

489
00:17:11,997 --> 00:17:13,365
RUBICON MD.

490
00:17:13,432 --> 00:17:16,001
FOR THOSE WHO DON'T KNOW ABOUT

491
00:17:16,068 --> 00:17:18,737
RUBICON MD, OAK STREET HEALTH

492
00:17:18,804 --> 00:17:21,573
REQUIRED IN OCTOBER 2021 --

493
00:17:21,640 --> 00:17:24,309
ACQUIRED THEM IN OCTOBER 2021,

494
00:17:24,376 --> 00:17:25,511
LEADING TECHNOLOGY PLATFORM

495
00:17:25,577 --> 00:17:26,812
PROVIDING ACCESS TO SPECIALIST

496
00:17:26,879 --> 00:17:27,079
EXPERTISE.

497
00:17:27,146 --> 00:17:29,114
THIS EN AIBLEDZ OAK STREET TO

498
00:17:29,181 --> 00:17:30,682
INTEGRATE VIRTUAL SPECIALTY CARE

499
00:17:30,749 --> 00:17:32,117
INTO THEIR EXISTING CARE MODEL.

500
00:17:32,184 --> 00:17:33,952
THIS IS TO SIGNIFICANTLY

501
00:17:34,019 --> 00:17:36,021
STREAMLINE THE REFERRAL PROCESS,

502
00:17:36,088 --> 00:17:38,323
BETTER MANAGE COSTS, ENHANCE

503
00:17:38,390 --> 00:17:41,293
PATIENT EXPERIENCE AND PROVIDE

504
00:17:41,360 --> 00:17:42,995
MORE COMPREHENSIVE PATIENT CARE.

505
00:17:43,061 --> 00:17:45,097
THERE ARE OVER 230 SPECIAL IS

506
00:17:45,164 --> 00:17:48,233
COVERING ALL MAJOR SPECIALTIES.

507
00:17:48,300 --> 00:17:50,169
SO GETTING CLOSE TO THE END OF

508
00:17:50,235 --> 00:17:51,503
THE CONCLUSION HERE, I JUST

509
00:17:51,570 --> 00:17:53,138
WANTED TO GIVE A LITTLE STATUS

510
00:17:53,205 --> 00:17:55,441
UPDATE ON WHERE WE'RE AT AT THE

511
00:17:55,507 --> 00:17:55,674
MOMENT.

512
00:17:55,741 --> 00:17:57,009
SO WE ARE WORKING TO FINALIZE

513
00:17:57,075 --> 00:17:58,944
THE PILOT, AND WE HAVE ALREADY

514
00:17:59,011 --> 00:18:02,114
GAINED MUCH INSIGHT FROM CLINICS

515
00:18:02,181 --> 00:18:03,682
WHO OFFER IMPLEMENTATION, WHICH

516
00:18:03,749 --> 00:18:04,750
HAS BEEN GREAT.

517
00:18:04,817 --> 00:18:06,785
FOR EXAMPLE, WE'VE BEEN STREEN

518
00:18:06,852 --> 00:18:08,720
LINING THE APP TO BE --

519
00:18:08,787 --> 00:18:10,656
STREAMLINING THE APP TO BE MORE

520
00:18:10,722 --> 00:18:11,757
EFFICIENT, UPDATING SCREEN

521
00:18:11,824 --> 00:18:13,158
VISUALS FOR BETTER WORKFLOW AND

522
00:18:13,225 --> 00:18:15,260
THEN IN TERMS OF IMPLEMENTATION

523
00:18:15,327 --> 00:18:16,762
CHALLENGES, WE MADE CHANGES TO

524
00:18:16,829 --> 00:18:18,964
THE APP PER THE USE OF A QR CODE

525
00:18:19,031 --> 00:18:20,699
INSTEAD OF A BARCODE, AND WHILE

526
00:18:20,766 --> 00:18:22,468
WE COULD USE OUR EPIC

527
00:18:22,534 --> 00:18:23,836
INTEGRATION WITH THE TOOLBOX

528
00:18:23,902 --> 00:18:26,538
DETECT PROJECT AS A GUIDE AND A

529
00:18:26,605 --> 00:18:29,041
FOUNDATION, WE STILL HAD TO

530
00:18:29,107 --> 00:18:31,210
COMPLETELY CUSTOMIZE THE EHR

531
00:18:31,276 --> 00:18:32,578
INTEGRATION INTO CANOPY AND

532
00:18:32,644 --> 00:18:35,848
GREENWAY TO MEET OAK STREET

533
00:18:35,914 --> 00:18:38,350
HEALTH'S SECURITY MEASURES AND

534
00:18:38,417 --> 00:18:38,684
REQUIREMENTS.

535
00:18:38,750 --> 00:18:40,452
AND WITH THAT, I JUST WANT TO

536
00:18:40,519 --> 00:18:42,187
MENTION AT THAT OUR LIMITATIONS

537
00:18:42,254 --> 00:18:43,989
ARE THAT WE ARE COLLECTING DATA

538
00:18:44,056 --> 00:18:45,157
FROM ONLY OAK STREET HEALTH

539
00:18:45,224 --> 00:18:46,458
CLINICS AND THAT WE WILL BE

540
00:18:46,525 --> 00:18:49,962
RELYING ON EHR OUTCOME

541
00:18:50,028 --> 00:18:50,229
PRIMARILY.

542
00:18:50,295 --> 00:18:52,364
AND THAT IS THE END OF MY

543
00:18:52,431 --> 00:18:52,698
PRESENTATION.

544
00:18:52,764 --> 00:19:03,075
THANK YOU SO MUCH.

545
00:19:14,186 --> 00:19:19,424
>> THANK YOU VERY MUCH.

546
00:19:19,491 --> 00:19:22,594
I'M NOT SURE IF WE CAN CONDENSE

547
00:19:22,661 --> 00:19:24,363
THE SLIDE BACK TO OUR

548
00:19:24,429 --> 00:19:34,740
ORIGINAL -- OKAY.

549
00:19:37,409 --> 00:19:38,143
>> ALL RIGHT.

550
00:19:38,210 --> 00:19:39,978
THANK YOU ALL.

551
00:19:40,045 --> 00:19:41,847
SO OUR NEXT GROUP OF TALKS,

552
00:19:41,914 --> 00:19:43,148
WE'LL GO ONE TO THE NEXT, WOULD

553
00:19:43,215 --> 00:19:45,350
YOU LIKE ME TO INTRODUCE YOU ALL

554
00:19:45,417 --> 00:19:47,753
RIGHT NOW, OR ONE BY ONE?

555
00:19:47,819 --> 00:19:49,288
WHATEVER IS EASIEST?

556
00:19:49,354 --> 00:19:50,656
>> YOU CAN DO ALL OF US.

557
00:19:50,722 --> 00:19:51,290
>> OKAY.

558
00:19:51,356 --> 00:19:51,790
ALL RIGHT.

559
00:19:51,857 --> 00:19:52,791
WE'LL DO THEM ALL.

560
00:19:52,858 --> 00:19:54,393
SO THIS IS GOING TO BE A SUITE

561
00:19:54,459 --> 00:19:56,261
OF THREE PRESENTATIONS ON MYCOG

562
00:19:56,328 --> 00:20:00,365
ON THE TABLET AND MOBILE

563
00:20:00,432 --> 00:20:00,599
PROGRAM.

564
00:20:00,666 --> 00:20:03,635
SO WE'LL START OFF WITH

565
00:20:03,702 --> 00:20:05,804
DR. NOWINSKI WHO IS GOING TO BE

566
00:20:05,871 --> 00:20:07,573
SPEAK BEING REMOTE COGNITIVE

567
00:20:07,639 --> 00:20:09,207
SCREENING IN HEALTHY OLDER

568
00:20:09,274 --> 00:20:10,842
ADULTS FOR PRIMARY CARE WITH THE

569
00:20:10,909 --> 00:20:12,744
MYCOG MOBILE APP, ITERATIVE

570
00:20:12,811 --> 00:20:14,780
DESIGN AND USABILITY EVALUATION.

571
00:20:14,846 --> 00:20:16,648
WE'LL THEN CONTINUE ON WITH

572
00:20:16,715 --> 00:20:17,716
DR. STEPHANIE YOUNG WHO WILL BE

573
00:20:17,783 --> 00:20:19,084
PRESENTING ON REMOTE

574
00:20:19,151 --> 00:20:21,386
SELF-ADMINISTRATION OF COGNITIVE

575
00:20:21,453 --> 00:20:23,455
SCREENERS PRIOR TO A PRIMARY

576
00:20:23,522 --> 00:20:26,525
CARE VISIT, A PRELIMINARY

577
00:20:26,592 --> 00:20:27,292
EVALUATION OF THE RELIABILITY

578
00:20:27,359 --> 00:20:28,694
AND USABILITY OF THE MYCOG

579
00:20:28,760 --> 00:20:30,429
MOBILE SCREENING APP, AND THEN

580
00:20:30,495 --> 00:20:32,130
WE'LL FINISH UP WITH CALLIE

581
00:20:32,197 --> 00:20:34,933
JONES, WHO WILL BE TALKING ABOUT

582
00:20:35,000 --> 00:20:36,368
THE CONSTRUCT AND CLINICAL

583
00:20:36,435 --> 00:20:38,236
VALIDATION OF MYCOG MOBILE.

584
00:20:38,303 --> 00:20:40,105
A REMOTE SMARTPHONE BASED

585
00:20:40,172 --> 00:20:40,806
COGNITIVE SCREENER.

586
00:20:40,872 --> 00:20:41,239
ALL RIGHT.

587
00:20:41,306 --> 00:20:51,483
THANK YOU.

588
00:20:52,084 --> 00:20:52,784
>> ALL RIGHT.

589
00:20:52,851 --> 00:20:53,885
GOOD AFTERNOON, EVERYBODY.

590
00:20:53,952 --> 00:20:56,288
I AM VERY EXCITED TO TELL YOU

591
00:20:56,355 --> 00:20:59,691
ABOUT MYCOG MOBILE, WHICH IS THE

592
00:20:59,758 --> 00:21:05,063
SMARTPHONE BASED VERSION OF

593
00:21:05,130 --> 00:21:14,506
MYCOG.

594
00:21:14,573 --> 00:21:16,341
I'M GOING TO PROVIDE AN

595
00:21:16,408 --> 00:21:18,276
INTRODUCTION OVERVIEW TO MYCOG

596
00:21:18,343 --> 00:21:19,578
MOBILE, AND THEN IT WILL BE

597
00:21:19,645 --> 00:21:21,480
FOLLOWED UP BY STEPHANIE AND

598
00:21:21,546 --> 00:21:23,015
CALLIE WHO WILL TELL YOU ABOUT

599
00:21:23,081 --> 00:21:27,886
OUR PROJECTS THAT WE'RE DOING.

600
00:21:27,953 --> 00:21:29,221
YOU HAVE ALREADY BEEN PRESENTED

601
00:21:29,287 --> 00:21:31,023
WITH THE RATIONALE FOR DOING

602
00:21:31,089 --> 00:21:32,357
COGNITIVE SCREENING IN PRIMARY

603
00:21:32,424 --> 00:21:35,293
CARE CLINICS, SO I WON'T GO OVER

604
00:21:35,360 --> 00:21:38,830
THOSE AGAIN, BUT I WILL SAY THAT

605
00:21:38,897 --> 00:21:41,700
MYCOG MOBILE IS ANOTHER ATTEMPT

606
00:21:41,767 --> 00:21:45,437
TO MEET THAT NEED BY A VALID,

607
00:21:45,504 --> 00:21:46,838
RELIABLE ACCURATE AND FEASIBLE

608
00:21:46,905 --> 00:21:50,575
WAY TO ASSESS COGNITIVE FUNCTION

609
00:21:50,642 --> 00:21:52,611
IN PRIMARY CARE CLINICS.

610
00:21:52,678 --> 00:21:54,713
SO IF YOU WERE HERE THIS MORNING

611
00:21:54,780 --> 00:21:56,581
AND HEARD MIKE WOLF'S TALK, THIS

612
00:21:56,648 --> 00:21:58,884
IS AGAIN PART OF IT, WE ARE

613
00:21:58,950 --> 00:22:00,218
TRYING TO PROVIDE A SUITE OF

614
00:22:00,285 --> 00:22:02,988
PRODUCTS THAT CAN MEET DIFFERENT

615
00:22:03,055 --> 00:22:12,931
NEEDS FOR DIFFERENT CLINICS.

616
00:22:12,998 --> 00:22:13,932
MYCOG MOBILE INCLUDES MANY OF

617
00:22:13,999 --> 00:22:16,001
THE SAME FEATURES THAT MYCOG

618
00:22:16,068 --> 00:22:16,401
DOES.

619
00:22:16,468 --> 00:22:17,769
IT CAN BE DONE PRIOR TO A

620
00:22:17,836 --> 00:22:20,072
PRIMARY CARE VISIT, IT IS

621
00:22:20,138 --> 00:22:21,273
SELF-ADMINISTERED, RESULTS ARE

622
00:22:21,339 --> 00:22:23,842
AUTOMATICALLY SENT TO THE EHR

623
00:22:23,909 --> 00:22:25,043
WHEN THE PATIENT IS DONE AND

624
00:22:25,110 --> 00:22:27,746
THERE THE PHYSICIAN CAN VIEW

625
00:22:27,813 --> 00:22:30,248
THEM BEFORE THE PATIENT ACTUALLY

626
00:22:30,315 --> 00:22:34,653
COMES IN, AND AS IT WAS IN

627
00:22:34,720 --> 00:22:37,723
MYCOG, IF THE PATIENT SCORES IN

628
00:22:37,789 --> 00:22:39,491
THE HIGH RISK FOR COGNITIVE

629
00:22:39,558 --> 00:22:41,126
IMPAIRMENT RANGE, THEN

630
00:22:41,193 --> 00:22:44,529
APPROPRIATE BEST PRACTICE ALERTS

631
00:22:44,596 --> 00:22:45,697
ARE AUTOMATICALLY AVAILABLE AND

632
00:22:45,764 --> 00:22:49,768
PUT INTO THE EHR, AND THEN THE

633
00:22:49,835 --> 00:22:51,636
CLINICIAN CAN DISCUSS THOSE

634
00:22:51,703 --> 00:22:53,271
RECOMMENDATIONS WITH THE PATIENT

635
00:22:53,338 --> 00:22:54,906
AND THE FAMILY IF NEEDED AND

636
00:22:54,973 --> 00:22:58,176
THEN DECIDE WHAT ARE THE NEXT

637
00:22:58,243 --> 00:22:58,376
STEPS.

638
00:22:58,443 --> 00:22:59,845
WHAT IS DIFFERENT ABOUT MYCOG

639
00:22:59,911 --> 00:23:02,013
MOBILE AGAIN IS IT'S A

640
00:23:02,080 --> 00:23:07,152
SMARTPHONE, IT DOESN'T USE --

641
00:23:07,219 --> 00:23:09,054
AND IT'S FOR REMOTE ASSESSMENT,

642
00:23:09,121 --> 00:23:10,789
SO IT'S NOT GOING ON USE THE

643
00:23:10,856 --> 00:23:12,591
SAME KINDS OF WAYS OF GETTING

644
00:23:12,657 --> 00:23:13,859
INTO IT.

645
00:23:13,925 --> 00:23:15,727
SO, YOU KNOW, INSTEAD OF HAVING

646
00:23:15,794 --> 00:23:20,732
A BARCODE, IT WILL PROBABLY BE

647
00:23:20,799 --> 00:23:22,534
SOMETHING THROUGH LIKE MY CHART.

648
00:23:22,601 --> 00:23:23,702
THEY WILL DOWNLOAD THE APP AND

649
00:23:23,769 --> 00:23:27,873
THEN THEY WILL TAKE IT ON THEIR

650
00:23:27,939 --> 00:23:28,406
OWN.

651
00:23:28,473 --> 00:23:29,708
IT ALSO LOOKS A LITTLE BIT

652
00:23:29,775 --> 00:23:32,010
DIFFERENT AS YOU CAN SEE, CALLED

653
00:23:32,077 --> 00:23:33,411
COGNITIVE CHECKUP.

654
00:23:33,478 --> 00:23:34,012
THERE'S BEEN SOME DESIGN

655
00:23:34,079 --> 00:23:35,413
ELEMENTS TO MAKE IT MORE

656
00:23:35,480 --> 00:23:38,583
APPROPRIATE FOR SOMEONE DOING ON

657
00:23:38,650 --> 00:23:44,489
THEIR OWN.

658
00:23:44,556 --> 00:23:45,590
MYCOG HAS BEEN ABLE TO TAKE

659
00:23:45,657 --> 00:23:47,359
ADVANTAGE AND LEVERAGE TO OTHER

660
00:23:47,425 --> 00:23:49,327
PROJECTS, SO MYCOG ITSELF, WHICH

661
00:23:49,394 --> 00:23:51,930
IS THE TABLET APP AND WAS

662
00:23:51,997 --> 00:23:54,466
DESIGNED FOR IN PERSON

663
00:23:54,533 --> 00:23:56,101
ADMINISTRATION, AND THEN THE

664
00:23:56,168 --> 00:23:57,536
MOBILE TOOLBOX WHICH YOU HEARD

665
00:23:57,602 --> 00:23:59,404
ABOUT EARLIER TODAY TOO, WHICH

666
00:23:59,471 --> 00:24:03,341
IS A RESEARCH TOOL THAT WAS

667
00:24:03,408 --> 00:24:05,310
DEVELOPED FOR REMOTE ASSESSMENT

668
00:24:05,377 --> 00:24:09,581
OF COGNITION AND OTHER

669
00:24:09,648 --> 00:24:11,016
SUPPLEMENTAL SCALES.

670
00:24:11,082 --> 00:24:13,185
SO WE TOOK WHAT WE LEARNED FROM

671
00:24:13,251 --> 00:24:18,123
THOSE TWO PROJECTS, MEASURES

672
00:24:18,190 --> 00:24:19,424
TECHNOLOGY, AND WE ARE CREATING

673
00:24:19,491 --> 00:24:20,625
THIS REMOTE CLINICAL TOOL.

674
00:24:20,692 --> 00:24:23,128
AND IT USES FOUR MEASURES THAT

675
00:24:23,195 --> 00:24:29,701
ARE EITHER IN MYCOG OR MOBILE

676
00:24:29,768 --> 00:24:32,337
TOOLBOX AND IN EXPROAMENT WE

677
00:24:32,404 --> 00:24:34,206
ADAPTED FOR THIS PARTICULAR USE,

678
00:24:34,272 --> 00:24:36,041
REMOTE SELF-ADMINISTRATION

679
00:24:36,107 --> 00:24:37,275
BEFORE PRIMARY CARE VISIT.

680
00:24:37,342 --> 00:24:38,710
IT CURRENTLY INCLUDES THESE FOUR

681
00:24:38,777 --> 00:24:40,779
MEASURES PLUS WE DECIDED TO ADD

682
00:24:40,846 --> 00:24:42,614
THREE SURVEY QUESTIONS, ONE TO

683
00:24:42,681 --> 00:24:45,584
GET INFORMATION ABOUT SUBJECTIVE

684
00:24:45,650 --> 00:24:47,652
COGNITIVE CONCERNS, BECAUSE AS

685
00:24:47,719 --> 00:24:49,187
YOU HEARD IN SOME OF THE OTHER

686
00:24:49,254 --> 00:24:50,822
PRESENTATIONS THAT IT'S NOT --

687
00:24:50,889 --> 00:24:52,524
THESE MEASURES, THESE PRODUCTS

688
00:24:52,591 --> 00:24:54,659
ARE NOT AIMED ONLY FOR AN ANNUAL

689
00:24:54,726 --> 00:24:56,494
WELLNESS VISIT, BUT ALSO IF

690
00:24:56,561 --> 00:24:58,730
THERE IS A CONCERN IN BETWEEN

691
00:24:58,797 --> 00:25:01,533
VISITS OR A CONCERN RAISED AS

692
00:25:01,600 --> 00:25:04,502
PART OF A VISIT, SO THAT WE CAN

693
00:25:04,569 --> 00:25:07,105
ALSO ADMINISTER FOR THOSE CASES.

694
00:25:07,172 --> 00:25:08,206
AND WE WANTED TO KNOW, IS THERE

695
00:25:08,273 --> 00:25:09,207
A CONCERN.

696
00:25:09,274 --> 00:25:12,143
WE'RE ALSO ASKING ABOUT AGE AND

697
00:25:12,210 --> 00:25:13,311
EDUCATION.

698
00:25:13,378 --> 00:25:15,647
SO FOUR MEASURES IN THESE

699
00:25:15,714 --> 00:25:16,748
ADDITIONAL THREE SURVEY

700
00:25:16,815 --> 00:25:18,283
QUESTIONS, THE MYCOG MOBILE IS

701
00:25:18,350 --> 00:25:19,217
CURRENTLY LONGER THAN WE WANT IT

702
00:25:19,284 --> 00:25:21,453
TO BE FOR A SELF-ADMINISTERED

703
00:25:21,519 --> 00:25:21,820
BATTERY.

704
00:25:21,887 --> 00:25:24,756
SO OUR LONG-TERM GOAL IS TO

705
00:25:24,823 --> 00:25:26,625
REDUCE THE NUMBER OF MEASURES IN

706
00:25:26,691 --> 00:25:28,593
ORDER TO REDUCE TESTING TIME,

707
00:25:28,660 --> 00:25:30,996
AND WE'RE GOING TO DO THIS BY

708
00:25:31,062 --> 00:25:32,697
RUNNING A CLINICAL VALIDATION

709
00:25:32,764 --> 00:25:35,700
STUDY, WHICH YOU WILL HEAR ABOUT

710
00:25:35,767 --> 00:25:36,568
IN LATER PRESENTATIONS, AND

711
00:25:36,635 --> 00:25:38,103
WE'LL USE THE DATA FROM THAT TO

712
00:25:38,169 --> 00:25:40,205
DECIDE WHICH ARE THE BEST

713
00:25:40,272 --> 00:25:42,374
MEASURES OUT OF THOSE FOUR THAT

714
00:25:42,440 --> 00:25:45,911
WILL PREDICT COGNITIVE

715
00:25:45,977 --> 00:25:46,211
IMPAIRMENT.

716
00:25:46,278 --> 00:25:47,746
SO EVEN THOUGH IT'S

717
00:25:47,812 --> 00:25:48,847
SELF-ADMINISTERED REMOTELY, WE

718
00:25:48,914 --> 00:25:52,250
WANT TO MAKE SURE THAT IT'S NOT

719
00:25:52,317 --> 00:25:54,319
TOO LONG SO THAT THE PEOPLE

720
00:25:54,386 --> 00:26:03,962
ACTUALLY DO IT.

721
00:26:04,029 --> 00:26:05,363
NOW WE'RE GOING TO BRIEFLY

722
00:26:05,430 --> 00:26:06,264
EXPLAIN, DESCRIBE THE MEASURES

723
00:26:06,331 --> 00:26:07,332
THAT ARE INCLUDED, AND THESE

724
00:26:07,399 --> 00:26:09,434
HAVE BEEN ADAPTED FROM EXISTING

725
00:26:09,501 --> 00:26:09,901
MEASUREMENT SYSTEMS.

726
00:26:09,968 --> 00:26:11,836
SO THE FIRST ONE THAT IS IN THE

727
00:26:11,903 --> 00:26:16,341
BATTERY SCURNL THE FACE-NAME

728
00:26:16,408 --> 00:26:17,976
ASSOCIATIVE MEMORY EXAM WHICH

729
00:26:18,043 --> 00:26:20,578
THE ORIGINAL VERSION WAS

730
00:26:20,645 --> 00:26:23,648
DEVELOPED BY RENTZ A VERSION IN

731
00:26:23,715 --> 00:26:25,850
THE NIH TOOLBOX AND A VERSION IN

732
00:26:25,917 --> 00:26:27,819
THE MOBILE TOOLBOX, AND IT IS

733
00:26:27,886 --> 00:26:31,990
PRESENTED IN TERMS OF AN INITIAL

734
00:26:32,057 --> 00:26:34,059
LEARNING TRIAL WHERE THE PERSON

735
00:26:34,125 --> 00:26:35,794
IS, YOU KNOW, DOES SOME

736
00:26:35,860 --> 00:26:37,128
PROCESSING SO THEY WILL REMEMBER

737
00:26:37,195 --> 00:26:39,531
THESE FACE-NAME PAIRS, SO IT'S A

738
00:26:39,597 --> 00:26:40,398
FACE-NAME PAIR.

739
00:26:40,465 --> 00:26:43,034
THEN WE HAVE A DELAY, AND THEN

740
00:26:43,101 --> 00:26:44,669
THEY HAVE THESE THREE SUBTESTS

741
00:26:44,736 --> 00:26:47,072
WHERE WE ASSESS THEIR MEMORY FOR

742
00:26:47,138 --> 00:26:49,407
THE FACE-NAME PAIRS IN THREE

743
00:26:49,474 --> 00:26:50,575
DIFFERENT WAYS, DO THEY

744
00:26:50,642 --> 00:26:52,610
RECOGNIZE THE FACE, CAN THEY

745
00:26:52,677 --> 00:26:55,113
MATCH THE NAME WITH THE CORRECT

746
00:26:55,180 --> 00:26:58,283
FACE, AND CAN THEY RECALL THE

747
00:26:58,350 --> 00:26:59,818
FIRST LETTER OF THE PERSON'S

748
00:26:59,884 --> 00:27:00,018
NAME.

749
00:27:00,085 --> 00:27:02,153
AND THE SCORE ON THIS TEST IS

750
00:27:02,220 --> 00:27:04,622
HOW MANY THEY CAN CORRECT ON ALL

751
00:27:04,689 --> 00:27:06,257
THREE OF THESE -- HOW MANY THEY

752
00:27:06,324 --> 00:27:09,995
GET CORRECT ON ALL THREE OF

753
00:27:10,061 --> 00:27:10,729
THESE.

754
00:27:10,795 --> 00:27:13,498
THEY ALSO GET A COGNITIVE

755
00:27:13,565 --> 00:27:15,667
CONTROL EXECUTIVE FUNCTION TEST,

756
00:27:15,734 --> 00:27:19,270
WHICH WE CALL IT MY SORTING IN

757
00:27:19,337 --> 00:27:20,839
MYCOG MOBILE.

758
00:27:20,905 --> 00:27:22,707
IT IS AN ADAPTATION OF A MEASURE

759
00:27:22,774 --> 00:27:24,075
IN THE MOBILE TOOLBOX, AND

760
00:27:24,142 --> 00:27:25,977
THERE'S ALSO A VERSION IN MYCOG.

761
00:27:26,044 --> 00:27:28,079
AND WHAT THE PERSON HAS TO DO IS

762
00:27:28,146 --> 00:27:30,015
THEY HAVE TO CATEGORIZE THE

763
00:27:30,081 --> 00:27:31,649
IMAGE WI COLOR OR SHAPE, THEY

764
00:27:31,716 --> 00:27:33,518
ARE PRESENTED WITH WORD SHAPE OR

765
00:27:33,585 --> 00:27:36,454
THE WORD COLOR, THEY DO THE

766
00:27:36,521 --> 00:27:38,223
CATEGORIZATION, AND THE MEASURE

767
00:27:38,289 --> 00:27:39,290
SWITCHES BACK AND FORTH, BACK

768
00:27:39,357 --> 00:27:40,725
AND FORTH TO ASSESS THEIR

769
00:27:40,792 --> 00:27:44,029
COGNITIVE FLEXIBILITY.

770
00:27:44,095 --> 00:27:46,664
WE ALSO GIVE THEM A WORKING

771
00:27:46,731 --> 00:27:47,565
MEMORY MEASURE.

772
00:27:47,632 --> 00:27:49,167
THIS WAS ADAPTED FROM SEQUENCES

773
00:27:49,234 --> 00:27:52,570
IN MOBILE TOOLBOX, AND IT'S A

774
00:27:52,637 --> 00:27:55,540
WELL-KNOWN EXISTING PARADIGM.

775
00:27:55,607 --> 00:27:56,408
PARTICIPANTS ARE PRESENTED WITH

776
00:27:56,474 --> 00:27:58,810
A SERIES OF NUMBERS AND THE

777
00:27:58,877 --> 00:28:01,513
SERIES GETS LONGER DEPENDING ON

778
00:28:01,579 --> 00:28:03,348
HOW MANY THEY COULD CORRECT.

779
00:28:03,415 --> 00:28:05,083
THEY GET THE SEQUENCE OF LETTERS

780
00:28:05,150 --> 00:28:07,552
AND NUMBERS, AND THEN THEY HAVE

781
00:28:07,619 --> 00:28:10,755
TO REMEMBER THEM AND SORT THEM

782
00:28:10,822 --> 00:28:12,057
IN THEIR MIND AND THEN ORDER

783
00:28:12,123 --> 00:28:16,327
THEM BY THE LETTERS FIRST, THEN

784
00:28:16,394 --> 00:28:18,730
BY NUMBERS.

785
00:28:18,797 --> 00:28:22,434
AND THEN FINALLY WE HAVE MY

786
00:28:22,500 --> 00:28:22,700
PICTURES.

787
00:28:22,767 --> 00:28:24,636
THIS IS AGAIN AN ADAPTATION OF A

788
00:28:24,702 --> 00:28:25,937
TEST THAT'S ALREADY IN THE

789
00:28:26,004 --> 00:28:28,506
MOBILE TOOLBOX, AS WELL AS

790
00:28:28,573 --> 00:28:28,907
MYCOG.

791
00:28:28,973 --> 00:28:31,109
AGAIN, THIS IS A VERSION OF

792
00:28:31,176 --> 00:28:31,543
MYCOG.

793
00:28:31,609 --> 00:28:34,312
AND IT IS AN EPISODIC MEMORY

794
00:28:34,379 --> 00:28:34,512
TEST.

795
00:28:34,579 --> 00:28:39,084
THEY SEE A SEQUENCE OF PICTURES

796
00:28:39,150 --> 00:28:41,286
AND THIS SEQUENCE IS IN A

797
00:28:41,352 --> 00:28:42,821
PARTICULAR ORDER, IT DOESN'T

798
00:28:42,887 --> 00:28:44,055
HAVE TO BE LOGICALLY ARRANGED

799
00:28:44,122 --> 00:28:46,558
THAT WAY, BUT THEY SEE IT IN A

800
00:28:46,624 --> 00:28:47,525
PARTICULAR ORDER.

801
00:28:47,592 --> 00:28:50,695
THERE'S A BRIEF AUDIO

802
00:28:50,762 --> 00:28:50,995
DESCRIPTION.

803
00:28:51,062 --> 00:28:52,130
THE PICTURES SCRAMBLE

804
00:28:52,197 --> 00:28:54,199
THEMSELVES, AND THEY THEN ARE

805
00:28:54,265 --> 00:28:56,134
ASKED TO REARRANGE THE IMAGES IF

806
00:28:56,201 --> 00:28:58,269
THE ORDER BY PUTTING THEM IN THE

807
00:28:58,336 --> 00:29:00,138
SERIES OF, AS YOU CAN SEE HERE,

808
00:29:00,205 --> 00:29:01,106
THESE OPEN BOXES.

809
00:29:01,172 --> 00:29:03,842
SO THEY START OUT WITH A

810
00:29:03,908 --> 00:29:04,709
FOUR-IMAGE PRACTICE TRIAL, AND

811
00:29:04,776 --> 00:29:10,281
THEN IT JUMPS UP TO TWELVE

812
00:29:10,348 --> 00:29:10,849
IMAGES.

813
00:29:10,915 --> 00:29:12,617
YEAH, TWELVE IMAGES.

814
00:29:12,684 --> 00:29:14,552
WE HAD TO DO SOME ADAPTATION IN

815
00:29:14,619 --> 00:29:16,321
TERMS OF CHANGE IT GO FROM MYCOG

816
00:29:16,387 --> 00:29:17,489
BECAUSE OF THE SCREEN SIZE.

817
00:29:17,555 --> 00:29:19,057
YOU KNOW, WE WANT TO BE ABLE TO

818
00:29:19,124 --> 00:29:20,925
MAKE SURE THAT THE PERSON CAN

819
00:29:20,992 --> 00:29:23,161
SEE THESE TWELVE PICTURES

820
00:29:23,228 --> 00:29:27,832
CLEARLY ENOUGH ON A SMALL

821
00:29:27,899 --> 00:29:28,066
SCREEN.

822
00:29:28,133 --> 00:29:29,934
SO THOSE ARE THE FOUR MEASURES,

823
00:29:30,001 --> 00:29:32,570
AND IT'S A BRIEF OVERVIEW OF

824
00:29:32,637 --> 00:29:34,606
WHAT MYCOG MOBILE LOOKS LIKE.

825
00:29:34,672 --> 00:29:36,808
AND NOW MY COLLEAGUES ARE GOING

826
00:29:36,875 --> 00:29:39,511
TO PRESENT THE FINDINGS OR AT

827
00:29:39,577 --> 00:29:41,846
LEAST THE PLAN OF THREE ONGOING

828
00:29:41,913 --> 00:29:43,581
STUDIES THAT WE'RE DOING ON

829
00:29:43,648 --> 00:29:46,451
MYCOG MOBILE.

830
00:29:46,518 --> 00:29:49,020
THE STUDIES WILL GET USABILITY,

831
00:29:49,087 --> 00:29:51,689
THEY LOOK THE AFEASIBILITY AND

832
00:29:51,756 --> 00:29:53,224
THEN CONSTRUCT AND CLINICAL

833
00:29:53,291 --> 00:29:53,658
VALIDATION.

834
00:29:53,725 --> 00:29:54,325
WELL, THANK YOU.

835
00:29:54,392 --> 00:29:57,629
NOW WE'LL TURN IT OVER TO

836
00:29:57,695 --> 00:30:07,872
STEPHANIE.

837
00:30:11,376 --> 00:30:13,811
>> IT LOCKS LIKE OUR

838
00:30:13,878 --> 00:30:14,946
ACKNOWLEDGMENT SLIDE DID MAKE IT

839
00:30:15,013 --> 00:30:16,114
INTO THE DECK.

840
00:30:16,181 --> 00:30:17,282
AGAIN, ACKNOWLEDGING FOLKS ON

841
00:30:17,348 --> 00:30:18,249
THE PROJECT.

842
00:30:18,316 --> 00:30:22,787
THANK YOU SO MUCH.

843
00:30:22,854 --> 00:30:23,454
ALL RIGHT.

844
00:30:23,521 --> 00:30:24,489
SO I'M GOING TO TALK ABOUT TWO

845
00:30:24,556 --> 00:30:25,957
OF THE STUDIES THAT WE'VE

846
00:30:26,024 --> 00:30:27,959
ALREADY COMPLETED USING MYCOG

847
00:30:28,026 --> 00:30:28,393
MOBILE.

848
00:30:28,459 --> 00:30:30,061
THE FIRST SOMEONE A USABILITY

849
00:30:30,128 --> 00:30:31,663
STUDY AND JUST A LITTLE BIT

850
00:30:31,729 --> 00:30:33,631
ABOUT THE DESIGN.

851
00:30:33,698 --> 00:30:36,467
AND THEN A PILOT STUDY THAT WE

852
00:30:36,534 --> 00:30:37,402
COMPLETED WITH THE VERSION ONE

853
00:30:37,468 --> 00:30:38,336
OF THE APP.

854
00:30:38,403 --> 00:30:39,971
I'M JUST GOING ON BRIEFLY GIVE

855
00:30:40,038 --> 00:30:42,073
AN OVERVIEW ON THESE, BUT BOTH

856
00:30:42,140 --> 00:30:43,608
OF THESE STUDIES HAVE BEEN

857
00:30:43,675 --> 00:30:46,644
PUBLISHED IN JMIR AND I'LL GIVE

858
00:30:46,711 --> 00:30:47,879
THE CODE LINK IT IF YOU WANT TO

859
00:30:47,946 --> 00:30:50,315
LOOK AT MORE INFORMATION ABOUT

860
00:30:50,381 --> 00:30:50,748
THEM.

861
00:30:50,815 --> 00:30:52,617
SO WHEN WE SOUGHT OUT TO MAKE

862
00:30:52,684 --> 00:30:56,221
THE MYCOG MOBILE APP, WE KNEW

863
00:30:56,287 --> 00:30:58,856
THAT THE DESIGN WAS GOING TO BE

864
00:30:58,923 --> 00:31:01,259
REALLY IMPORTANT FOR

865
00:31:01,326 --> 00:31:02,126
SELF-ADMINISTERING SMARTPHONE

866
00:31:02,193 --> 00:31:03,127
APP, RIGHT, THIS IS SOMETHING

867
00:31:03,194 --> 00:31:05,496
THAT YOU'RE GOING TO USE ON YOUR

868
00:31:05,563 --> 00:31:06,631
OWN PERSONAL SMARTPHONE AND YOU

869
00:31:06,698 --> 00:31:08,233
DON'T HAVE AS MUCH CONTROL OVER

870
00:31:08,299 --> 00:31:09,133
PARTICIPANTS WHEN THEY'RE TAKING

871
00:31:09,200 --> 00:31:09,467
IT.

872
00:31:09,534 --> 00:31:11,736
SO AS DR. WOLF MENTIONED EARLIER

873
00:31:11,803 --> 00:31:13,838
TODAY, KIND OF THAT ITERATIVE

874
00:31:13,905 --> 00:31:15,807
DESIGN PROCESS WAS VERY

875
00:31:15,873 --> 00:31:16,341
IMPORTANT.

876
00:31:16,407 --> 00:31:18,409
WE USED A HUMAN CENTERED DESIGN

877
00:31:18,476 --> 00:31:20,612
AEXPROACH WE DID HAVE UX

878
00:31:20,678 --> 00:31:21,512
DESIGNERS HELPING US WITH THIS

879
00:31:21,579 --> 00:31:23,147
AND GIVING US SOME INPUT, BUT

880
00:31:23,214 --> 00:31:25,550
WHAT THAT REALLY ENTAILS IS KIND

881
00:31:25,617 --> 00:31:27,952
OF GATHERING DATA FROM THE END

882
00:31:28,019 --> 00:31:29,821
USERS AND THAT COULD BE ADULTS

883
00:31:29,887 --> 00:31:33,324
WHO ARE OVER AGE 65 BUT ALSO OUR

884
00:31:33,391 --> 00:31:35,627
CLINICAL END USERS, SO THEIRS

885
00:31:35,693 --> 00:31:37,262
MULTIPLE PEAM WHO ARE KIND OF

886
00:31:37,328 --> 00:31:38,563
INVOLVED IN THE PROCESS --

887
00:31:38,630 --> 00:31:39,597
MULTIPLE PEOPLE WHO ARE INVOLVED

888
00:31:39,664 --> 00:31:43,635
IN THE PROCESS, INCLUDING

889
00:31:43,701 --> 00:31:47,538
PRACTICE MANAGERS R AND THOSE

890
00:31:47,605 --> 00:31:50,074
GATHERING DATA AT THEIR CLINICS,

891
00:31:50,141 --> 00:31:51,075
GATHER INFO FROM THE

892
00:31:51,142 --> 00:31:52,610
STAKEHOLDERS AND USE THAT TO

893
00:31:52,677 --> 00:31:54,145
INFORM THE DESIGN PIECE BY PIECE

894
00:31:54,212 --> 00:31:55,446
AS WE DEVELOPED THE APP.

895
00:31:55,513 --> 00:31:57,615
SO I'M NOT GOING TO GO INTO TOO

896
00:31:57,682 --> 00:31:58,950
MUCH DETAIL ABOUT THE WHOLE

897
00:31:59,017 --> 00:32:00,952
PROCESS, JUST KIND OF GIVE YOU A

898
00:32:01,019 --> 00:32:03,588
BRIEF OVERVIEW OF WHO WE TALKED

899
00:32:03,655 --> 00:32:03,755
TO.

900
00:32:03,821 --> 00:32:05,857
SO WE STARTED OUT TALKING TO

901
00:32:05,923 --> 00:32:06,391
CLINICIANS.

902
00:32:06,457 --> 00:32:07,825
THESE WERE MOSTLY PRIMARY CARE

903
00:32:07,892 --> 00:32:09,661
PROVIDERS OR PEOPLE WHO WORKED

904
00:32:09,727 --> 00:32:11,329
IN GERONTOLOGY, AND THEY KIND OF

905
00:32:11,396 --> 00:32:13,865
GAVE US THE FORMATIVE

906
00:32:13,931 --> 00:32:15,600
INTERVIEWS, THAT'S WHERE WE

907
00:32:15,667 --> 00:32:16,801
THOUGHT OF KIND OF THE

908
00:32:16,868 --> 00:32:18,002
FOUNDATIONAL DESIGN OF MYCOG

909
00:32:18,069 --> 00:32:19,871
MOBILE, LIKE WHAT DOES IT LOOK

910
00:32:19,937 --> 00:32:21,272
LIKE, HOW DOES IT WORK, HOW IS

911
00:32:21,339 --> 00:32:22,807
IT TAKEN, WHAT ARE THE THINGS

912
00:32:22,874 --> 00:32:24,142
THAT THEY REALLY VALUE OUT OF

913
00:32:24,208 --> 00:32:24,642
IT.

914
00:32:24,709 --> 00:32:26,844
WE ALSO SPOKE WITH CLINIC

915
00:32:26,911 --> 00:32:28,513
ADMINISTRATORS, SO THAT WOULD BE

916
00:32:28,579 --> 00:32:31,349
LIKE MEDICAL ASSISTANTS OR

917
00:32:31,416 --> 00:32:32,750
PRACTICE MANAGERS, TO KIND OF

918
00:32:32,817 --> 00:32:33,751
UNDERSTAND WHAT WOULD BE THE

919
00:32:33,818 --> 00:32:35,753
BEST WORKFLOW FOR ACTUALLY

920
00:32:35,820 --> 00:32:37,355
IMPLEMENTING THIS IN A CLINIC.

921
00:32:37,422 --> 00:32:38,790
AND THEN OF COURSE WE TALKED TO

922
00:32:38,856 --> 00:32:39,857
OLDER ADULTS WHO WOULD ACTUALLY

923
00:32:39,924 --> 00:32:41,526
BE THE PEOPLE WHO USED THIS ON

924
00:32:41,592 --> 00:32:44,495
THEIR OWN SMARTPHONES, SO WE DID

925
00:32:44,562 --> 00:32:46,030
A COMMUNITY STAKEHOLDER PANEL

926
00:32:46,097 --> 00:32:49,867
WHERE WE SPOKE WITH A BUNCH OF

927
00:32:49,934 --> 00:32:51,069
OLDER ADULTS FROM DIVERSE

928
00:32:51,135 --> 00:32:52,170
BACKGROUND AND IS KIND OF ABOUT

929
00:32:52,236 --> 00:32:53,471
THEIR OPINIONS ASK ATTITUDES

930
00:32:53,538 --> 00:32:54,605
ABOUT USING A COGNITIVE SCREENER

931
00:32:54,672 --> 00:32:56,541
LIKE THIS ON A SMARTPHONE, THEN

932
00:32:56,607 --> 00:32:58,309
WE ALSO DID INDIVIDUAL

933
00:32:58,376 --> 00:33:00,712
INTERVIEWS WITH FOLKS AND HAD

934
00:33:00,778 --> 00:33:03,314
THEM ACTUALLY INTERACT WITH

935
00:33:03,381 --> 00:33:04,415
CLICKABLE PROTOTYPES OF THE

936
00:33:04,482 --> 00:33:06,050
DESIGN SO WE COULD GET SOME

937
00:33:06,117 --> 00:33:09,420
FEEDBACK THERE.

938
00:33:09,487 --> 00:33:13,491
SO FINDINGS FROM THE DATA

939
00:33:13,558 --> 00:33:15,460
COLLECTION WITH THESE DIFFERENT

940
00:33:15,526 --> 00:33:16,561
STAKEHOLDERS KIND OF SHOWED US

941
00:33:16,627 --> 00:33:18,496
THAT PEOPLE CARE ABOUT DIFFERENT

942
00:33:18,563 --> 00:33:18,730
THINGS.

943
00:33:18,796 --> 00:33:20,698
SO WHEN WE SPOKE WITH

944
00:33:20,765 --> 00:33:22,233
CLINICIANS, THE THINGS THAT THEY

945
00:33:22,300 --> 00:33:24,001
CARE ABOUT ARE USING WELL

946
00:33:24,068 --> 00:33:27,271
VALIDATED SCREENING TESTS, BEING

947
00:33:27,338 --> 00:33:29,574
ABLE TO VIEW THE SCORES WITHIN

948
00:33:29,640 --> 00:33:31,776
THEIR OWN EHR WAS REALLY

949
00:33:31,843 --> 00:33:33,411
IMPORTANT, SO YOU'RE NOT

950
00:33:33,478 --> 00:33:35,079
ACTUALLY LIKE TAKING SOME SCORES

951
00:33:35,146 --> 00:33:37,115
FROM A PIECE OF PAPER, HAND

952
00:33:37,181 --> 00:33:39,884
SCORING IT AND THEN ENTERING IT,

953
00:33:39,951 --> 00:33:41,819
EHR IS AUTOMATICALLY POPULATING,

954
00:33:41,886 --> 00:33:43,154
THEN ALSO BEING AINL TO KNOW

955
00:33:43,221 --> 00:33:44,455
WHAT TO DO WITH THE SCORES --

956
00:33:44,522 --> 00:33:45,556
ABLE TO KNOW WHAT TO DO WITH THE

957
00:33:45,623 --> 00:33:47,759
SCORES WHEN THEY GET THAT, BEST

958
00:33:47,825 --> 00:33:48,893
PRACTICES, SAYING OKAY, I HAVE A

959
00:33:48,960 --> 00:33:50,461
POSITIVE RESULT, WHAT'S THE NEXT

960
00:33:50,528 --> 00:33:50,661
STEP.

961
00:33:50,728 --> 00:33:52,330
FOR STAFF, IT WAS IMPORTANT TO

962
00:33:52,397 --> 00:33:53,965
KIND OF EFFICIENCY IS THE MOST

963
00:33:54,031 --> 00:33:55,400
REALLY IMPORTANT THING IS KIND

964
00:33:55,466 --> 00:33:57,602
OF MINIMIZING THE STAFF

965
00:33:57,668 --> 00:33:58,803
INVOLVEMENT IN THE SCREENING

966
00:33:58,870 --> 00:34:00,138
PROCESS, MOST OF THESE CLINICS

967
00:34:00,204 --> 00:34:02,507
ARE VERY STRAPPED FOR TIME AND

968
00:34:02,573 --> 00:34:03,541
STAFF RESOURCES AND BEING ABLE

969
00:34:03,608 --> 00:34:05,176
TO KIND OF EASILY COMMUNICATE

970
00:34:05,243 --> 00:34:07,912
WITH A PATIENT WHAT THE

971
00:34:07,979 --> 00:34:09,013
SITUATION IS AND MOVE THROUGH

972
00:34:09,080 --> 00:34:11,282
THE PROCESS SEAMLESSLY.

973
00:34:11,349 --> 00:34:13,317
FOR PATIENTS, THEY CARED ABOUT,

974
00:34:13,384 --> 00:34:14,752
YOU KNOW, A LOT OF THOSE THINGS

975
00:34:14,819 --> 00:34:18,156
AS WELL, BUT REALLY AM I GOING

976
00:34:18,222 --> 00:34:23,060
TO BE GETTING GOOD RESULTS, AM ?

977
00:34:23,127 --> 00:34:24,195
THOSE ARE THE MOTIVATIONS TO

978
00:34:24,262 --> 00:34:26,431
TAKE THESE SCREENING TESTS TO

979
00:34:26,497 --> 00:34:27,432
MONITOR CHANGE OVER TIME AND

980
00:34:27,498 --> 00:34:29,734
KNOW IF THEY HAVE SOME SORT OF

981
00:34:29,801 --> 00:34:30,067
PROBLEM.

982
00:34:30,134 --> 00:34:32,570
AND THEN THERE'S ALSO SHARED

983
00:34:32,637 --> 00:34:34,705
PRIORITIES BY THESE DIFFERENT

984
00:34:34,772 --> 00:34:35,640
STAKEHOLDERS, BUT REALLY THE

985
00:34:35,706 --> 00:34:37,375
MAIN PRIORITY THAT WE FOUND THAT

986
00:34:37,442 --> 00:34:38,743
WAS IN COMMON ACROSS ALL THE

987
00:34:38,810 --> 00:34:39,811
PEOPLE WHO WOULD BE INVOLVED IN

988
00:34:39,877 --> 00:34:42,246
THIS PROCESS IS BEING ABLE TO

989
00:34:42,313 --> 00:34:43,881
SAVE TIME DURING THEIR IN PERSON

990
00:34:43,948 --> 00:34:45,416
VISIT TO FOCUS ON OTHER THINGS

991
00:34:45,483 --> 00:34:47,452
THAT ARE MORE IMPORTANT, RIGHT?

992
00:34:47,518 --> 00:34:49,287
SO TAKING A SCREENING TEST IN AN

993
00:34:49,353 --> 00:34:50,822
IN PERSON VISIT TAKES TIME, AND

994
00:34:50,888 --> 00:34:51,722
IF THERE'S NOTHING WRONG,

995
00:34:51,789 --> 00:34:53,024
THERE'S NO CONCERN, WE DON'T

996
00:34:53,090 --> 00:34:54,992
NEED TO TAKE UP THAT TIME DURING

997
00:34:55,059 --> 00:34:57,061
YOUR VISIT.

998
00:34:57,128 --> 00:34:58,396
SO BASED ON ALL THE INFORMATION

999
00:34:58,463 --> 00:35:00,331
THAT WE GOT FROM THESE DIFFERENT

1000
00:35:00,398 --> 00:35:02,867
STAKEHOLDERS, THIS KIND OF SHOWS

1001
00:35:02,934 --> 00:35:05,102
THE JOURNEY, USER JOURNEY OF HOW

1002
00:35:05,169 --> 00:35:08,005
THEY WOULD USE MYCOG MOBILE.

1003
00:35:08,072 --> 00:35:09,207
SO PATIENT SCHEDULES AN ANNUAL

1004
00:35:09,273 --> 00:35:10,842
WELLNESS VISIT, IT MIGHT NOT BE

1005
00:35:10,908 --> 00:35:12,376
JUST AN ANNUAL WELLNESS VISIT,

1006
00:35:12,443 --> 00:35:14,245
IT COULD BE JUST A PRIMARY CARE

1007
00:35:14,312 --> 00:35:15,646
VISIT, AS WE'VE SPOKEN ABOUT

1008
00:35:15,713 --> 00:35:18,382
BEFORE, OR SOME OTHER TYPE OF

1009
00:35:18,449 --> 00:35:18,583
VISIT.

1010
00:35:18,649 --> 00:35:20,284
AND PRIOR TO THE VISIT, THEY

1011
00:35:20,351 --> 00:35:21,452
WOULD RECEIVE A MESSAGE FROM

1012
00:35:21,519 --> 00:35:22,987
THEIR CLINIC THAT SAYS, YOU

1013
00:35:23,054 --> 00:35:24,288
KNOW, IT'S TIME TO COMPLETE

1014
00:35:24,355 --> 00:35:25,723
MYCOG MOBILE, YOUR DOCTOR HAS

1015
00:35:25,790 --> 00:35:27,125
ASKED YOU TO COMPLETE THIS,

1016
00:35:27,191 --> 00:35:28,025
PLEASE DOWNLOAD THIS APP.

1017
00:35:28,092 --> 00:35:29,894
THEY WILL DOWNLOAD THAT ONTO

1018
00:35:29,961 --> 00:35:31,295
THEIR PERSONAL SMARTPHONE,

1019
00:35:31,362 --> 00:35:32,830
COMPLETE THE MEASURES, THEY'RE

1020
00:35:32,897 --> 00:35:34,031
COMPLETELY SELF-ADMINISTERED SO

1021
00:35:34,098 --> 00:35:35,366
THEY'RE DOING THIS ALL ON THEIR

1022
00:35:35,433 --> 00:35:35,533
OWN.

1023
00:35:35,600 --> 00:35:37,235
AS SOON AS THEY'RE DONE, THOSE

1024
00:35:37,301 --> 00:35:39,203
SCORES ARE SENT DIRECTLY TO THE

1025
00:35:39,270 --> 00:35:41,606
EHR AND POPULATE WITHIN THE EHR

1026
00:35:41,672 --> 00:35:43,140
SO THE CLINICIAN CAN SEE THAT.

1027
00:35:43,207 --> 00:35:44,242
IF THERE IS A POSITIVE RESULT

1028
00:35:44,308 --> 00:35:47,178
THERE, THEY WILL ALSO GET BEST

1029
00:35:47,245 --> 00:35:48,079
PRACTICE ALERTS THAT'S TELLING

1030
00:35:48,145 --> 00:35:49,580
THEM OKAY HERE IS THE NEXT STEP,

1031
00:35:49,647 --> 00:35:51,249
WHICH ALLOWS THE CLI ANYTHING TO

1032
00:35:51,315 --> 00:35:52,216
PREPARE FOR THE VISIT BEFORE THE

1033
00:35:52,283 --> 00:35:53,718
PATIENT COMES IN, IF THEY WOULD

1034
00:35:53,784 --> 00:35:53,918
LIKE.

1035
00:35:53,985 --> 00:35:55,520
THEN DURING THE VISIT.

1036
00:35:55,586 --> 00:35:56,621
ARE THAT'S WHEN THE PATIENT WILL

1037
00:35:56,687 --> 00:35:58,122
GET THE RESULTS, THEY'LL TALK

1038
00:35:58,189 --> 00:35:59,123
ABOUT GET APPROPRIATE REFERRALS

1039
00:35:59,190 --> 00:36:03,060
AND NEXT STEPS IN THAT WAY.

1040
00:36:03,127 --> 00:36:06,030
SO JUST A FEW KEY TAKE AWAYS IN

1041
00:36:06,097 --> 00:36:07,365
DESIGN FEATURES WE'VE LEARNED

1042
00:36:07,431 --> 00:36:09,300
FROM THIS ITERATIVE DESIGN

1043
00:36:09,367 --> 00:36:11,469
PROCESS.

1044
00:36:11,536 --> 00:36:14,005
AGAIN, THE THAT MAIN BENEFIT OF

1045
00:36:14,071 --> 00:36:15,439
MYCOG MOBILE IS SAYING THAT IN

1046
00:36:15,506 --> 00:36:16,607
OFFICE TIME.

1047
00:36:16,674 --> 00:36:18,175
MYCOG MOBILE IS

1048
00:36:18,242 --> 00:36:19,143
SELF-ADMINISTERED BY THE PATIENT

1049
00:36:19,210 --> 00:36:22,213
REMOTE ON A SECURE APP, SO ONE

1050
00:36:22,280 --> 00:36:23,748
OF THE MAIN THINGS WE'VE LEARNED

1051
00:36:23,814 --> 00:36:26,250
RIGHT AWAY WAS THAT THIS JUST

1052
00:36:26,317 --> 00:36:28,553
COULD NOT BE PROCTORED ANY WAY.

1053
00:36:28,619 --> 00:36:30,521
THESE CLINICS ARE TOO STROPPED

1054
00:36:30,588 --> 00:36:32,390
FOR TIME -- STRAPPED FOR TIME,

1055
00:36:32,456 --> 00:36:33,891
SO IN THIS WAY IT'S COMPLETELY

1056
00:36:33,958 --> 00:36:36,761
ON THE PATIENT TO COMPLETE IT.

1057
00:36:36,827 --> 00:36:38,729
WE DID LEARN THAT PATIENTS

1058
00:36:38,796 --> 00:36:40,898
WANTED TO KNOW KIND OF WHY ARE

1059
00:36:40,965 --> 00:36:41,999
THEY TAKING THIS AND WHAT THE

1060
00:36:42,066 --> 00:36:43,100
PROCESS IS GOING TO BE.

1061
00:36:43,167 --> 00:36:44,635
SO IT WAS IMPORTANT FOR US TO

1062
00:36:44,702 --> 00:36:46,504
MAKE REALLY CLEAR INTRODUCTIONS

1063
00:36:46,571 --> 00:36:47,838
AND EXIT SCREENS ABOUT THIS IS

1064
00:36:47,905 --> 00:36:49,340
WHAT'S GOING ON HAPPEN, THIS IS

1065
00:36:49,407 --> 00:36:50,441
WHAT YOU CAN EXPECT, THIS IS

1066
00:36:50,508 --> 00:36:52,410
WHEN YOU'LL SEE YOUR RESULTS,

1067
00:36:52,476 --> 00:36:54,145
AND THEN ALSO MAKING SURE THAT

1068
00:36:54,211 --> 00:36:56,047
WE HAD A USER EXPERIENCE DESIGN

1069
00:36:56,113 --> 00:36:58,449
THAT WAS REALLY OPTIMIZED FOR

1070
00:36:58,516 --> 00:37:00,518
OLDER ADULTS, FOR EVERYONE, BUT

1071
00:37:00,585 --> 00:37:02,253
OLDER ADULTS IN PARTICULAR.

1072
00:37:02,320 --> 00:37:05,323
SO SIMPLE INTERACTIVE TASK

1073
00:37:05,389 --> 00:37:07,158
INSTRUCTIONS, LARGE TESTS, KIND

1074
00:37:07,224 --> 00:37:08,859
OF SIMPLE EASY TO USE GESTURES

1075
00:37:08,926 --> 00:37:10,227
ON THE PHONE LIKE TAPPING

1076
00:37:10,294 --> 00:37:12,964
INSTEAD OF DRAGGING, THINGS LIKE

1077
00:37:13,030 --> 00:37:13,764
THAT.

1078
00:37:13,831 --> 00:37:14,265
OKAY.

1079
00:37:14,332 --> 00:37:16,601
SO I WILL TALK BRIEFLY ABOUT OUR

1080
00:37:16,667 --> 00:37:18,569
PILOT STUDY.

1081
00:37:18,636 --> 00:37:20,004
SO THAT WAS THE INFORMATION THAT

1082
00:37:20,071 --> 00:37:22,506
WE TOOK TO DESIGN AND ACTUALLY

1083
00:37:22,573 --> 00:37:24,575
DEVELOP THE VERSION ONE OF THIS

1084
00:37:24,642 --> 00:37:26,110
APP, WHICH WE DID MAKE A

1085
00:37:26,177 --> 00:37:27,411
SMARTPHONE APP THAT WAS READY TO

1086
00:37:27,478 --> 00:37:29,280
BE USED BY PATIENTS.

1087
00:37:29,347 --> 00:37:31,015
SO WE CONDUCTED A SMALL PILOT

1088
00:37:31,082 --> 00:37:32,450
JUST TO KIND OF SEE THE

1089
00:37:32,516 --> 00:37:33,317
FEASIBILITY OF ACTUALLY

1090
00:37:33,384 --> 00:37:35,419
COMPLETING THIS ON THEIR OWN.

1091
00:37:35,486 --> 00:37:36,721
SO OUR RESEARCH QUESTIONS FOR

1092
00:37:36,787 --> 00:37:39,357
THIS PILOT WERE CAN OLDER ADULTS

1093
00:37:39,423 --> 00:37:41,659
COMPLETE THIS BATTERY MYCOG

1094
00:37:41,726 --> 00:37:43,294
MOBILE REMOTELY ON THEIR OWN ON

1095
00:37:43,361 --> 00:37:45,196
THEIR OWN SMARTPHONES WITH ZERO

1096
00:37:45,262 --> 00:37:45,496
SUPPORT?

1097
00:37:45,563 --> 00:37:47,264
WHAT ARE THE RELIABILITY OF THE

1098
00:37:47,331 --> 00:37:47,531
MEASURES?

1099
00:37:47,598 --> 00:37:48,666
WE LOOKED AT INTERNAL

1100
00:37:48,733 --> 00:37:50,101
CONSISTENCY AND TEST RETEST

1101
00:37:50,167 --> 00:37:52,069
RELIABILITY, WHEN IT'S TAKEN

1102
00:37:52,136 --> 00:37:52,336
REMOTELY.

1103
00:37:52,403 --> 00:37:54,205
AND THEN WE DID SOME USABILITY

1104
00:37:54,271 --> 00:37:56,574
WORK IN THIS AS WELL, HOW DO

1105
00:37:56,641 --> 00:37:58,309
THESE PATIENTS RATE THE USER

1106
00:37:58,376 --> 00:38:01,178
EXPERIENCE OF USING THE APP.

1107
00:38:01,245 --> 00:38:04,448
SO WE HAD A SAMPLE OF 51

1108
00:38:04,515 --> 00:38:04,982
PARTICIPANTS HERE.

1109
00:38:05,049 --> 00:38:07,084
I DON'T HAVE THE OVERALL END

1110
00:38:07,151 --> 00:38:09,720
THERE, BUT 51 OLDER ADULTS

1111
00:38:09,787 --> 00:38:14,291
AROUND THE MEAN AGE WAS 74 YEARS

1112
00:38:14,358 --> 00:38:14,458
OLD.

1113
00:38:14,525 --> 00:38:15,626
THEY WERE E-MAILED INSTRUCTIONS

1114
00:38:15,693 --> 00:38:17,495
ABOUT HOW TO DOWNLOAD THE APP ON

1115
00:38:17,561 --> 00:38:19,130
TO THEIR OWN SMARTPHONES AND

1116
00:38:19,196 --> 00:38:20,665
THEN THEY COMPLETED THE FOUR

1117
00:38:20,731 --> 00:38:21,866
ACTIVITIES ON THEIR SMART

1118
00:38:21,932 --> 00:38:24,168
DISPOANS A BRIEF SURVEY ABOUT --

1119
00:38:24,235 --> 00:38:26,237
SMARTPHONES ASK A BRIEF SURVEY

1120
00:38:26,303 --> 00:38:28,239
ABOUT RELIABILITY WITH NO HELP

1121
00:38:28,305 --> 00:38:29,540
AND AFTER TWO WEEKS THEY

1122
00:38:29,607 --> 00:38:30,307
COMPLETED THEM AGAIN.

1123
00:38:30,374 --> 00:38:32,810
WE FOUND THAT 100% OF THE

1124
00:38:32,877 --> 00:38:34,145
PATIENTS IN OUR SAMPLE WERE ABLE

1125
00:38:34,211 --> 00:38:35,446
TO SUCCESSFULLY DOWNLOAD THE APP

1126
00:38:35,513 --> 00:38:36,580
AND COMPLETE ALL FOUR MEASURES

1127
00:38:36,647 --> 00:38:38,282
AT THE BASELINE AND WE HAD

1128
00:38:38,349 --> 00:38:39,517
PRETTY GOOD FOLLOW-UP THERE, SO

1129
00:38:39,583 --> 00:38:41,786
ONLY TWO PEOPLE DID NOT RESPOND

1130
00:38:41,852 --> 00:38:44,088
AT FOLLOW-UP, WHICH WAS

1131
00:38:44,155 --> 00:38:44,355
PROMISING.

1132
00:38:44,422 --> 00:38:45,823
THE MEAN USABILITY RATINGS ON

1133
00:38:45,890 --> 00:38:47,692
OUR USABILITY SCALE INDICATED A

1134
00:38:47,758 --> 00:38:55,366
POSITIVE USER EXPERIENCE, ABOVE

1135
00:38:55,433 --> 00:38:55,700
AVERAGE.

1136
00:38:55,766 --> 00:38:56,701
I'M NOT GOING GET TOO MUCH IN

1137
00:38:56,767 --> 00:38:58,869
THE WEEDS WITH THIS HERE, BUT WE

1138
00:38:58,936 --> 00:39:01,505
DID FIND ACCEPTABLE RELIABILITY,

1139
00:39:01,572 --> 00:39:03,374
BOTH INTERNAL CONSISTENCY AND

1140
00:39:03,441 --> 00:39:04,875
TEST RETEST RELIABILITY FOR EACH

1141
00:39:04,942 --> 00:39:07,411
OF THE MEASURES.

1142
00:39:07,478 --> 00:39:11,015
THE NO PRACTICE EFFECTS EXCEPT

1143
00:39:11,082 --> 00:39:12,750
FOR I THINK MY FACE IS HERE,

1144
00:39:12,817 --> 00:39:15,386
WHICH AS DR. RENTZ EXPECTED

1145
00:39:15,453 --> 00:39:16,387
BEFORE, THAT'S WHAT WE WOULD

1146
00:39:16,454 --> 00:39:18,456
EXPECT, THIS IS A HEALTHY

1147
00:39:18,522 --> 00:39:19,223
POPULATION AND EXPECTED

1148
00:39:19,290 --> 00:39:20,958
CORRELATIONS WITH EDUCATION

1149
00:39:21,025 --> 00:39:24,462
EXCEPT FOR MY PICTURE WAS NOT

1150
00:39:24,528 --> 00:39:25,029
SIGNIFICANT.

1151
00:39:25,096 --> 00:39:26,464
OVERALL FINDINGS FROM THIS

1152
00:39:26,530 --> 00:39:27,631
STUDY, HEALTHY OLDER ADULTS IN

1153
00:39:27,698 --> 00:39:31,135
OUR SAMPLE CAN RELIABLY COMPLETE

1154
00:39:31,202 --> 00:39:33,104
MYCOG MOBILE REMOTE ON THEIR OWN

1155
00:39:33,170 --> 00:39:33,404
SMARTPHONES.

1156
00:39:33,471 --> 00:39:35,673
THE MEASURES HAVE ACCEPTABLE

1157
00:39:35,740 --> 00:39:37,274
RELIABILITY METRICS.

1158
00:39:37,341 --> 00:39:39,376
THEY CORRELATE POSITIVELY WITH

1159
00:39:39,443 --> 00:39:41,011
EDUCATION, AS WE WOULD EXPECT.

1160
00:39:41,078 --> 00:39:41,912
MY PICTURES DID NOT CORRELATE

1161
00:39:41,979 --> 00:39:43,414
WITH THAT, BUT THAT MIGHT BE DUE

1162
00:39:43,481 --> 00:39:45,716
TO THINGS LIKE CHEATING OR

1163
00:39:45,783 --> 00:39:46,984
SELF-SELECTION BIAS, AND THAT'S

1164
00:39:47,051 --> 00:39:47,618
SOMETHING THAT WE'RE GOING TO

1165
00:39:47,685 --> 00:39:49,453
HAVE TO LOOK AT IN OUR NEXT

1166
00:39:49,520 --> 00:39:49,653
STUDY.

1167
00:39:49,720 --> 00:39:52,623
AND THEN OVERALL PARTICIPANTS IN

1168
00:39:52,690 --> 00:39:54,792
THIS SAMPLE RATED USABILITY OF

1169
00:39:54,859 --> 00:39:55,993
ABOVE AVERAGE WHICH MEANS THAT

1170
00:39:56,060 --> 00:39:57,528
THEY'RE HAVING KIND OF A GOOD

1171
00:39:57,595 --> 00:40:00,498
EXPERIENCE, A POSITIVE

1172
00:40:00,564 --> 00:40:02,233
EXPERIENCE WITH THE APP.

1173
00:40:02,299 --> 00:40:03,667
SO IF YOU ARE INTERESTED IN THE

1174
00:40:03,734 --> 00:40:06,937
STUDY, THEY ARE BOTH ON JMIR

1175
00:40:07,004 --> 00:40:08,172
JOURNALS, AND I HAVE THE QR

1176
00:40:08,239 --> 00:40:10,040
CODES RIGHT THERE IF YOU WOULD

1177
00:40:10,107 --> 00:40:10,241
LIKE.

1178
00:40:10,307 --> 00:40:12,543
BUT YEAH, THAT'S ALL I HAD.

1179
00:40:12,610 --> 00:40:14,845
I'LL HAVE CALLIE TALK ABOUT OUR

1180
00:40:14,912 --> 00:40:16,947
UPCOMING STUDY, WHICH IS A

1181
00:40:17,014 --> 00:40:19,884
CLINICAL AND CONSTRUCT

1182
00:40:19,950 --> 00:40:30,161
VALIDATION.

1183
00:40:41,605 --> 00:40:42,873
>> OKAY.

1184
00:40:42,940 --> 00:40:43,440
HELLO, EVERYONE.

1185
00:40:43,507 --> 00:40:45,209
MY NAME IS CALLIE JONES.

1186
00:40:45,276 --> 00:40:46,944
I AM A RESEARCH COORDINATOR IN

1187
00:40:47,011 --> 00:40:49,213
THE DEPARTMENT OF MEDICAL SOCIAL

1188
00:40:49,280 --> 00:40:50,915
SCIENCES IN THE FEINBERG SCHOOL

1189
00:40:50,981 --> 00:40:52,283
OF MEDICINE AT NORTHWESTERN, AND

1190
00:40:52,349 --> 00:40:53,884
AS STEPHANIE SAID, I'LL BE

1191
00:40:53,951 --> 00:40:55,019
TALKING ABOUT THE JOINT

1192
00:40:55,085 --> 00:40:56,220
CONSTRUCT AND CLINICAL

1193
00:40:56,287 --> 00:40:58,722
VALIDATION OF BOTH MYCOG AND

1194
00:40:58,789 --> 00:41:00,491
MYCOG MOBILE, WHICH IS AN

1195
00:41:00,558 --> 00:41:01,926
UPCOMING STUDY THAT WE'RE

1196
00:41:01,992 --> 00:41:04,562
RUNNING THIS YEAR.

1197
00:41:04,628 --> 00:41:06,764
SO WE WENT INTO THE STUDY WITH

1198
00:41:06,831 --> 00:41:07,865
THESE THREE RESEARCH QUESTIONS.

1199
00:41:07,932 --> 00:41:09,500
FIRST, IS THERE EVIDENCE OF

1200
00:41:09,567 --> 00:41:11,669
CONSTRUCT VALIDITY OF THE MYCOG

1201
00:41:11,735 --> 00:41:12,870
MOBILE MEASURES WHEN COMPARED TO

1202
00:41:12,937 --> 00:41:14,638
GOLD STANDARD NEUROPSYCHOLOGICAL

1203
00:41:14,705 --> 00:41:15,840
ASSESSMENTS AND COGNITIVE

1204
00:41:15,906 --> 00:41:16,640
SCREENERS?

1205
00:41:16,707 --> 00:41:18,242
TWO, CAN PERFORMANCE ON MYCOG

1206
00:41:18,309 --> 00:41:19,877
MOBILE ACCURATELY DIFFERENTIATE

1207
00:41:19,944 --> 00:41:21,412
BETWEEN OLDER ADULTS WITH

1208
00:41:21,478 --> 00:41:22,379
COGNITIVE IMPAIRMENT AND OLDER

1209
00:41:22,446 --> 00:41:24,481
ADULTS WHO ARE COGNITIVELY

1210
00:41:24,548 --> 00:41:24,715
NORMAL?

1211
00:41:24,782 --> 00:41:26,550
AND THREE, CAN THE MYCOG MOBILE

1212
00:41:26,617 --> 00:41:29,286
BATTERY BE SHORTENED BUT STILL

1213
00:41:29,353 --> 00:41:32,156
MAINTAIN ADEQUATE PREDICTION

1214
00:41:32,223 --> 00:41:32,556
ABILITIES?

1215
00:41:32,623 --> 00:41:34,692
SO THIS IS OUR TARGET SAMPLE.

1216
00:41:34,758 --> 00:41:36,827
WE ARE ENSURING THAT IT'S

1217
00:41:36,894 --> 00:41:38,629
STRATIFIED BY AGE, RACE, GENDER,

1218
00:41:38,696 --> 00:41:39,897
AS WELL AS ETHNICITY, AND WE

1219
00:41:39,964 --> 00:41:43,968
HAVE A MAXIMUM OF 70% WHITE

1220
00:41:44,034 --> 00:41:45,502
NON-HISPANIC PEOPLE AND MAXIMUM

1221
00:41:45,569 --> 00:41:47,705
OF 50% OF PEOPLE WITH A

1222
00:41:47,771 --> 00:41:49,240
BACHELOR'S DEGREE OR HIGHER TO

1223
00:41:49,306 --> 00:41:53,277
ENSURE THAT WE DON'T GET A HOME

1224
00:41:53,344 --> 00:41:55,679
OJ NIS I CAN SAMPLE --

1225
00:41:55,746 --> 00:41:56,280
HOMOGENOUS SAMPLE.

1226
00:41:56,347 --> 00:41:57,414
THESE ARE THE PROCEDURES WE'RE

1227
00:41:57,481 --> 00:41:58,515
FOLLOWING, SO WE HAVE TWO

1228
00:41:58,582 --> 00:42:01,485
GROUPS, A HEALTHY CONTROL SAMPLE

1229
00:42:01,552 --> 00:42:07,157
WITH AN -- OF 200 -- AN N OF

1230
00:42:07,224 --> 00:42:10,027
200, CLINICAL SAMPLE 6 R5 BLUS

1231
00:42:10,094 --> 00:42:11,896
NO -- FOR HEALTHY CONTROL

1232
00:42:11,962 --> 00:42:13,530
SAMPLE, ADULTS 65 BLUS NO

1233
00:42:13,597 --> 00:42:14,832
HISTORY OF COGNITIVE IMPAIRMENT

1234
00:42:14,899 --> 00:42:16,600
AND MINI COG SCORE OF GREATER

1235
00:42:16,667 --> 00:42:17,668
THAN 5.

1236
00:42:17,735 --> 00:42:18,869
RECRUITED THROUGH EXTERNAL

1237
00:42:18,936 --> 00:42:20,871
MARKET RESEARCH AGENCY, BE

1238
00:42:20,938 --> 00:42:22,373
ADMINISTERED A BATTERY OF

1239
00:42:22,439 --> 00:42:23,040
EXTERNAL GOLD STANDARD MEASURES

1240
00:42:23,107 --> 00:42:24,708
IN PERSON AND THEY'LL

1241
00:42:24,775 --> 00:42:25,910
SELF-ADMINISTER MYCOG AND MYCOG

1242
00:42:25,976 --> 00:42:27,211
MOBILE IN THE LAP.

1243
00:42:27,278 --> 00:42:28,412
THE CLINICAL SAMPLE, WE'RE

1244
00:42:28,479 --> 00:42:30,381
LOOKING FOR ADULTS 65 PLUS WITH

1245
00:42:30,447 --> 00:42:32,683
A MINI COG SCORE OF LESS THAN 5

1246
00:42:32,750 --> 00:42:34,418
AND A DOCUMENTED DIAGNOSIS

1247
00:42:34,485 --> 00:42:36,287
RELATE TO MILD COGNITIVE

1248
00:42:36,353 --> 00:42:38,055
IMPAIRMENT, DEMENTIA, COGNITIVE

1249
00:42:38,122 --> 00:42:40,891
DEFICITS OR OTHER MEMORY LOSS.

1250
00:42:40,958 --> 00:42:42,626
WE'RE RECRUITING THESE PEOPLE

1251
00:42:42,693 --> 00:42:44,361
THROUGH SPECIALTY MEMORY CARE

1252
00:42:44,428 --> 00:42:45,462
CLINIC IN THE CHICAGO AREA.

1253
00:42:45,529 --> 00:42:47,765
WE'RE ALSO ADMINISTERING THE

1254
00:42:47,831 --> 00:42:50,367
MINI COG TO THESE ADULTS AND

1255
00:42:50,434 --> 00:42:52,469
WILL BE SELF-ADMINISTERING MYCOG

1256
00:42:52,536 --> 00:42:53,804
AND MYCOG MOBILE IN THE CLINIC

1257
00:42:53,871 --> 00:42:54,571
AS WELL.

1258
00:42:54,638 --> 00:42:57,308
SO THESE ARE THE MEASURES OF

1259
00:42:57,374 --> 00:42:58,309
CONVERGE ABILITY AND

1260
00:42:58,375 --> 00:42:59,810
DISCRIMINATIVE VALIDITY WE'LL BE

1261
00:42:59,877 --> 00:43:01,245
USING.

1262
00:43:01,312 --> 00:43:04,949
OUR TEST, THESE ARE OUR TEST

1263
00:43:05,015 --> 00:43:07,718
LISTS AND PLAN FOR MEASURING

1264
00:43:07,785 --> 00:43:09,553
CONVERGE ANT AND DISCRIMINATIVE

1265
00:43:09,620 --> 00:43:09,820
VALIDITY.

1266
00:43:09,887 --> 00:43:12,056
THESE ARE OUR PROPOSED ANALYSIS.

1267
00:43:12,122 --> 00:43:14,725
WE'LL BE LOOKING AT CORRELATIONS

1268
00:43:14,792 --> 00:43:16,894
BETWEEN SIMILAR AND DISSIMILAR

1269
00:43:16,961 --> 00:43:17,461
MEASURES.

1270
00:43:17,528 --> 00:43:27,438
FOR CONVERGEDEANLT VALIDITY,

1271
00:43:27,504 --> 00:43:29,740
TESTS -- THESE ARE HIGHER

1272
00:43:29,807 --> 00:43:32,776
CORRELATIONS WE EXPECT.

1273
00:43:32,843 --> 00:43:34,645
THEN DISSIMILARRING CONSTRUCTS,

1274
00:43:34,712 --> 00:43:35,980
FOR EXAMPLE TRAIL MAKING TEST

1275
00:43:36,046 --> 00:43:39,483
VERSUS MYCOG MOBILE'S MY

1276
00:43:39,550 --> 00:43:40,985
PICTURES, PROCESSING SPEED TIMES

1277
00:43:41,051 --> 00:43:41,986
FOR MY SPIBLGHTS A MEMORY TEST

1278
00:43:42,052 --> 00:43:44,054
AND WE EXPECT THESE TO HAVE

1279
00:43:44,121 --> 00:43:44,955
LOWER CORRELATIONS.

1280
00:43:45,022 --> 00:43:46,924
WE'LL ALSO LOOK AT INTERNAL

1281
00:43:46,991 --> 00:43:49,326
CONSISTENCY AGAIN IN THE SAMPLE,

1282
00:43:49,393 --> 00:43:51,729
AND IN THE CLINICAL SAMPLE WE

1283
00:43:51,795 --> 00:43:53,597
LOOK FOR MODELS THAT BEST

1284
00:43:53,664 --> 00:43:54,531
PREDICT CLINICAL GROUP STATUS

1285
00:43:54,598 --> 00:43:56,467
AND SEE IF WE CAN REDUCE THE

1286
00:43:56,533 --> 00:43:57,434
BATTERY OF THE TESTS THAT ARE

1287
00:43:57,501 --> 00:43:59,203
THE MOST PREDICTIVE.

1288
00:43:59,269 --> 00:44:00,838
FOR OUR NEXT STEPS WE'RE

1289
00:44:00,904 --> 00:44:03,273
STARTING DATA COLLECTION NEXT

1290
00:44:03,340 --> 00:44:03,574
MONTH.

1291
00:44:03,640 --> 00:44:05,209
WE'LL CONDUCT AN SEES OVER THE

1292
00:44:05,275 --> 00:44:07,611
SUMMER AND THEN WE WILL DPAISH

1293
00:44:07,678 --> 00:44:09,079
ANALYSES OVER THE SUMMER AND

1294
00:44:09,146 --> 00:44:10,681
MAKE FINAL VERSION OF APP BASED

1295
00:44:10,748 --> 00:44:11,949
ON MODEL PREDICTION AND USER

1296
00:44:12,016 --> 00:44:12,983
FEEDBACK AND THEN FIELD TEST

1297
00:44:13,050 --> 00:44:14,418
NEXT YEAR IN A PRIMARY CARE

1298
00:44:14,485 --> 00:44:16,053
CLINIC, AND ACTUALLY OUR ARTICLE

1299
00:44:16,120 --> 00:44:18,789
IN BMJ OPEN PROTOCOLS JUST GOT

1300
00:44:18,856 --> 00:44:20,424
PUBLISHED YESTERDAY.

1301
00:44:20,491 --> 00:44:22,159
SO YOU CAN GO CHECK THAT OUT.

1302
00:44:22,226 --> 00:44:32,403
THANK YOU.

1303
00:44:40,844 --> 00:44:41,578
>> ALL RIGHT.

1304
00:44:41,645 --> 00:44:43,414
THANK YOU VERY MUCH TO ALL OUR

1305
00:44:43,480 --> 00:44:43,680
SPEAKERS.

1306
00:44:43,747 --> 00:44:46,316
I'M GOING TO OPEN IT UP NOW FOR

1307
00:44:46,383 --> 00:44:49,386
QUESTION AND ANSWER PERIOD.

1308
00:44:49,453 --> 00:44:50,654
IF ANYONE HAS ANY QUESTIONS, YOU

1309
00:44:50,721 --> 00:44:52,022
CAN EITHER RAISE YOUR HAND AND

1310
00:44:52,089 --> 00:44:54,324
SPEAK UP OR COME DOWN THE

1311
00:44:54,391 --> 00:44:54,625
MICROPHONE.

1312
00:44:54,691 --> 00:45:04,868
YES, SIR?

1313
00:45:08,739 --> 00:45:12,576
>> (AWAY FROM MICROPHONE).

1314
00:45:12,643 --> 00:45:13,911
>> ACTUALLY, BEFORE YOU ANSWER,

1315
00:45:13,977 --> 00:45:15,212
I'M GOING TO JUST REPEAT THE

1316
00:45:15,279 --> 00:45:16,647
QUESTION FOR THOSE ONLINE,

1317
00:45:16,713 --> 00:45:17,347
BECAUSE I THINK THEY MAY NOT

1318
00:45:17,414 --> 00:45:18,449
HAVE BEEN ABLE TO HEAR.

1319
00:45:18,515 --> 00:45:20,784
THIS IS A QUESTION FROM A

1320
00:45:20,851 --> 00:45:21,452
PRACTICING ENGINEER ON TOLL GIST

1321
00:45:21,518 --> 00:45:25,289
WHO IS USING -- GERONTOLOGIST

1322
00:45:25,355 --> 00:45:27,458
WHO IS USING MYCOG IN THE HOME

1323
00:45:27,524 --> 00:45:28,992
FOR OLDER ADULTS AND HAD A

1324
00:45:29,059 --> 00:45:30,527
QUESTION ABOUT MYCOG MOBILE FOR

1325
00:45:30,594 --> 00:45:31,962
USE IF HE'S ALREADY SUBSCRIBED

1326
00:45:32,029 --> 00:45:33,397
TO THE MYCOG SERVICE.

1327
00:45:33,464 --> 00:45:36,266
IS THAT A FAIR RECAPITULATION?

1328
00:45:36,333 --> 00:45:37,267
>> IS THIS ON?

1329
00:45:37,334 --> 00:45:38,702
>> IT IS ON.

1330
00:45:38,769 --> 00:45:39,636
>> ALL RIGHT.

1331
00:45:39,703 --> 00:45:44,141
MYCOG MOBILE IS STILL IN

1332
00:45:44,208 --> 00:45:47,344
DEVELOPMENT, SO IT'S NOT

1333
00:45:47,411 --> 00:45:48,579
AVAILABLE FOR PUBLIC USE RIGHT

1334
00:45:48,645 --> 00:45:48,745
NOW.

1335
00:45:48,812 --> 00:45:49,580
IF YOU WANTED TO TALK WITH US,

1336
00:45:49,646 --> 00:45:51,181
WE WOULD BE HAPPY TO TALK WITH

1337
00:45:51,248 --> 00:45:56,086
YOU ABOUT COLLABORATION IN THE

1338
00:45:56,153 --> 00:45:57,721
FUTURE BUT RIGHT NOW WE STILL

1339
00:45:57,788 --> 00:46:06,363
HAVE TO FINALIZE THE MEASURE.

1340
00:46:06,430 --> 00:46:07,064
>> ALL RIGHT.

1341
00:46:07,131 --> 00:46:08,365
OTHER QUESTIONS?

1342
00:46:08,432 --> 00:46:08,532
YES.

1343
00:46:08,599 --> 00:46:11,668
WOULD YOU MIND COMING UP TO THE

1344
00:46:11,735 --> 00:46:11,969
MICROPHONE?

1345
00:46:12,035 --> 00:46:21,979
THANK YOU.

1346
00:46:22,045 --> 00:46:25,015
>> THANK YOU ALL FOR YOUR GREAT

1347
00:46:25,082 --> 00:46:25,449
PRESENTATION.

1348
00:46:25,516 --> 00:46:28,318
THIS MAY BE MORE ACROSS ALL THE

1349
00:46:28,385 --> 00:46:30,053
APPLICABILITY, BUT IS THERE ANY

1350
00:46:30,120 --> 00:46:31,989
TALK OR PLANNING STAGES FOR

1351
00:46:32,055 --> 00:46:38,795
PEOPLE WITH HEARING OR -- WHAT

1352
00:46:38,862 --> 00:46:40,564
WORD AM I LOOKING FOR?

1353
00:46:40,631 --> 00:46:41,431
VISION.

1354
00:46:41,498 --> 00:46:41,798
VISION-IMPAIRED.

1355
00:46:41,865 --> 00:46:43,734
THANK YOU.

1356
00:46:43,800 --> 00:46:45,335
IS THERE ANY TALK OF THAT?

1357
00:46:45,402 --> 00:46:52,409
THANK YOU.

1358
00:46:52,476 --> 00:46:53,944
>> THAT IS A GREAT QUESTION, AND

1359
00:46:54,011 --> 00:46:55,312
IT IS SOMETHING WE WOULD LIKE TO

1360
00:46:55,379 --> 00:46:58,482
CONSIDER IN THE FUTURE BECAUSE

1361
00:46:58,549 --> 00:47:00,450
AS YOU COULD SEE BASED ON THE

1362
00:47:00,517 --> 00:47:02,319
EXAMPLES WE SHOWED OF THESE

1363
00:47:02,386 --> 00:47:03,520
TESTS, THEY ARE HEAVILY

1364
00:47:03,587 --> 00:47:04,388
DEPENDENT ON VISION.

1365
00:47:04,454 --> 00:47:07,124
I MEAN, YOU HAVE TO SEE THEM.

1366
00:47:07,191 --> 00:47:08,892
SO RIGHT NOW WE DON'T HAVE ANY

1367
00:47:08,959 --> 00:47:14,131
ALTERNATIVES TO THAT, BUT WE DO

1368
00:47:14,198 --> 00:47:15,232
THINK IT IS IMPORTANT.

1369
00:47:15,299 --> 00:47:17,034
NOW, THE MYCOG MOBILE VERSION,

1370
00:47:17,100 --> 00:47:19,203
YOU CAN USE SOME OF THE

1371
00:47:19,269 --> 00:47:22,239
ACCESSIBILITY FEATURES OF THE

1372
00:47:22,306 --> 00:47:24,007
PHONE AS THESE WILL BE THE

1373
00:47:24,074 --> 00:47:25,309
PERSON'S OWN SMARTPHONES.

1374
00:47:25,375 --> 00:47:27,144
SO THERE WILL BE THAT, AT LEAST

1375
00:47:27,211 --> 00:47:28,912
TO SOME EXTENT.

1376
00:47:28,979 --> 00:47:31,215
BUT FOR THE MYCOG BATTERY ITSELF

1377
00:47:31,281 --> 00:47:37,888
IN CLINIC, IT'S STATIC.

1378
00:47:37,955 --> 00:47:40,857
DID THAT ANSWER IT?

1379
00:47:40,924 --> 00:47:42,626
>> ALL RIGHT.

1380
00:47:42,693 --> 00:47:45,762
THANK YOU.

1381
00:47:45,829 --> 00:47:48,498
>> THE ONLY OTHER THING I WOULD

1382
00:47:48,565 --> 00:47:51,568
ADD IS THAT AS MIKE WOLF HAD IN

1383
00:47:51,635 --> 00:47:53,203
HIS -- I THINK IN ONE

1384
00:47:53,270 --> 00:47:55,639
PRESENTATION, THERE IS NO

1385
00:47:55,706 --> 00:47:56,440
ONE-SIZE-FITS-ALL SOLUTION.

1386
00:47:56,506 --> 00:47:59,443
SO WE KNOW WE CAN'T BE THE

1387
00:47:59,509 --> 00:48:08,118
PRODUCT FOR EVERYBODY.

1388
00:48:08,185 --> 00:48:12,889
>> TO ME?

1389
00:48:12,956 --> 00:48:13,090
OKAY.

1390
00:48:13,156 --> 00:48:16,860
QUICK QUESTION.

1391
00:48:16,927 --> 00:48:19,363
I NOTICE THAT THE APP, THE MYCOG

1392
00:48:19,429 --> 00:48:21,999
MOBILE WAS ON IOS.

1393
00:48:22,065 --> 00:48:23,700
ARE THERE ANY PLANS FOR IT TO BE

1394
00:48:23,767 --> 00:48:25,836
MADE AVAILABLE FOR ANDROID,

1395
00:48:25,902 --> 00:48:28,972
GIVEN THAT YOU'RE DEPLOYING THIS

1396
00:48:29,039 --> 00:48:30,507
IN A CLINIC, YOU'RE GOING TO

1397
00:48:30,574 --> 00:48:34,878
HAVE A MIX OF PATIENT DEVICES.

1398
00:48:34,945 --> 00:48:37,981
>> SO RIGHT NOW IT IS ONLY IOS.

1399
00:48:38,048 --> 00:48:40,484
BUT THAT WAS JUST ONE OF OUR

1400
00:48:40,550 --> 00:48:42,686
FIRST GROUP OF CONCEPT -- PROOF

1401
00:48:42,753 --> 00:48:43,287
OF CONCEPT.

1402
00:48:43,353 --> 00:48:45,289
BUT WE DO HAVE PLANS IN THE NEXT

1403
00:48:45,355 --> 00:48:47,057
PHASE TO ALSO DEVELOP AN ANDROID

1404
00:48:47,124 --> 00:48:49,259
APP, BUT LIKE WAS SAID BEFORE,

1405
00:48:49,326 --> 00:48:50,694
WE'RE STILL TRYING TO FIGURE OUT

1406
00:48:50,761 --> 00:48:52,763
WHAT'S THE FINAL BATTERY, YOU

1407
00:48:52,829 --> 00:48:57,034
KNOW, FINALIZE EVERYTHING.

1408
00:48:57,100 --> 00:49:07,277
BUT NEXT.

1409
00:49:13,317 --> 00:49:14,551
>> THANKS.

1410
00:49:14,618 --> 00:49:15,552
VERY USEFUL PRESENTATION.

1411
00:49:15,619 --> 00:49:18,055
MAYBE I MISSED IT, BUT YOU WERE

1412
00:49:18,121 --> 00:49:20,457
USING THE HEALTHY ELDERLY TO

1413
00:49:20,524 --> 00:49:23,427
COMPARE WITH THE GOLD STANDARD

1414
00:49:23,493 --> 00:49:24,494
NEUROPSYCHOLOGICAL MEASURE, NOT

1415
00:49:24,561 --> 00:49:26,196
THE CLINICAL BATTERY.

1416
00:49:26,263 --> 00:49:30,233
IS THERE A REASON FOR THAT?

1417
00:49:30,300 --> 00:49:33,470
>> CAN YOU HEAR ME?

1418
00:49:33,537 --> 00:49:33,804
OKAY.

1419
00:49:33,870 --> 00:49:35,572
SO WE ARE GOING TO GIVE A MINI

1420
00:49:35,639 --> 00:49:37,974
COG TO THE CLINICAL BATTERY AND

1421
00:49:38,041 --> 00:49:41,712
THEN ALSO THE MYCOG MOBILE

1422
00:49:41,778 --> 00:49:43,980
MEASURES, BUT GIVING LIKE A

1423
00:49:44,047 --> 00:49:46,283
LENGTHY NEUROPSYCH BATTERY

1424
00:49:46,350 --> 00:49:50,153
WAS -- WE'RE RECRUITING THESE

1425
00:49:50,220 --> 00:49:52,022
PATIENTS FROM MANY CLINICS, SO

1426
00:49:52,089 --> 00:49:54,624
IT'S REALLY BURDENSOME FOR THEM

1427
00:49:54,691 --> 00:49:56,593
TO MOVE ON NEUROPSYCH BATTERY,

1428
00:49:56,660 --> 00:49:58,929
USING OUR MEASURE AS CLINICAL

1429
00:49:58,995 --> 00:49:59,563
GROUP STATUS.

1430
00:49:59,629 --> 00:50:00,931
SO IF YOU HAVE A DIAGNOSIS OF

1431
00:50:00,997 --> 00:50:04,201
ONE OF THE ICD-10 CODES RELATED

1432
00:50:04,267 --> 00:50:05,168
TO DID HE MEN SHARKS THAT'S SORT

1433
00:50:05,235 --> 00:50:06,536
OF THE OUTCOME VARIABLE.

1434
00:50:06,603 --> 00:50:08,372
BUT LTS A LIMITATION NOT HAVING

1435
00:50:08,438 --> 00:50:11,241
ALL THE GOLD STANDARDS -- BUT IT

1436
00:50:11,308 --> 00:50:13,377
IS A LIMITATION NOT HAVING ALL

1437
00:50:13,443 --> 00:50:20,417
THE GOLD STANDARDS ON CLINICAL.

1438
00:50:20,484 --> 00:50:21,151
>> HI.

1439
00:50:21,218 --> 00:50:26,390
I JUST HAVE SOME TECHNICAL

1440
00:50:26,456 --> 00:50:26,957
QUESTIONS.

1441
00:50:27,023 --> 00:50:28,925
DO YOU THINK WITH -- DO YOU SYNC

1442
00:50:28,992 --> 00:50:31,027
WITH ANY -- DO THE RESULTS GO TO

1443
00:50:31,094 --> 00:50:33,964
ANY EMR, OR IS IT JUST EPIC, OR

1444
00:50:34,030 --> 00:50:35,198
WHAT IS IT?

1445
00:50:35,265 --> 00:50:40,303
>> SO RIGHT NOW, IT IS EITHER

1446
00:50:40,370 --> 00:50:45,809
EPIC IN CLINIC OR AS YOU HEARD

1447
00:50:45,876 --> 00:50:48,845
ABOUT MYCOG TRIAL, IT SENDS THE

1448
00:50:48,912 --> 00:50:50,747
RESULTS TO THEIR CANOPY GREENWAY

1449
00:50:50,814 --> 00:50:50,981
SYSTEM.

1450
00:50:51,047 --> 00:50:52,883
>> OKAY.

1451
00:50:52,949 --> 00:50:54,751
>> MYCOG MOBILE BECAUSE WE'RE

1452
00:50:54,818 --> 00:50:56,520
GOING TO BE DOING AN INITIAL

1453
00:50:56,586 --> 00:50:58,688
EVALUATION AND VALIDATION AT

1454
00:50:58,755 --> 00:51:00,357
NORTHWESTERN, IT'S GOING TO BE

1455
00:51:00,424 --> 00:51:01,558
EPIC AGAIN, BUT ONE OF THE

1456
00:51:01,625 --> 00:51:04,828
THINGS THAT WE'RE VERY AWARE OF

1457
00:51:04,895 --> 00:51:06,797
AND THAT WE WANT TO DO AS MUCH

1458
00:51:06,863 --> 00:51:09,533
AS WE CAN IS TO HAVE A PRODUCT

1459
00:51:09,599 --> 00:51:13,270
THAT IS SCALABLE TO OTHER EHR'S,

1460
00:51:13,336 --> 00:51:18,809
BUT WE NEED TO START SOMEWHERE.

1461
00:51:18,875 --> 00:51:20,243
>> RIGHT.

1462
00:51:20,310 --> 00:51:20,444
WILL.

1463
00:51:20,510 --> 00:51:22,579
>> YOU'RE NOT PRESENTING ANY

1464
00:51:22,646 --> 00:51:24,114
RESULTS TO THE PARTICIPANTS,

1465
00:51:24,181 --> 00:51:26,316
YEAH, TO YOUR PATIENTS, RIGHT?

1466
00:51:26,383 --> 00:51:27,851
IT WOULD BE TOO HARD TO

1467
00:51:27,918 --> 00:51:31,555
INTERPRET OR MAYBE SCARY OR

1468
00:51:31,621 --> 00:51:32,456
SOMETHING, RIGHT?

1469
00:51:32,522 --> 00:51:33,890
WOULD YOU THINK ABOUT SOMETHING

1470
00:51:33,957 --> 00:51:34,858
LIKE THAT IN THE FUTURE?

1471
00:51:34,925 --> 00:51:36,359
>> THAT'S SOMETHING LIKE IN THE

1472
00:51:36,426 --> 00:51:37,527
USABILITY STUDIES THAT CAME UP,

1473
00:51:37,594 --> 00:51:39,563
I WANT TO KNOW HOW I DID.

1474
00:51:39,629 --> 00:51:41,231
BUT THAT'S ALWAYS TRICKY, RIGHT

1475
00:51:41,298 --> 00:51:45,602
WHRKS YOU'RE DOING KIND OF A

1476
00:51:45,669 --> 00:51:46,336
SELF-ADMINISTERED NEUROPSYCH,

1477
00:51:46,403 --> 00:51:47,337
YOU DON'T WANT TO TELL SOMEONE

1478
00:51:47,404 --> 00:51:49,539
ON YOUR PHONE THAT YOU HAVE

1479
00:51:49,606 --> 00:51:50,774
DEMENTIA OR SOMETHING LIKE THAT,

1480
00:51:50,841 --> 00:51:51,007
RIGHT?

1481
00:51:51,074 --> 00:51:53,376
SO WE'RE PRETTY CLEAR IN THE

1482
00:51:53,443 --> 00:51:54,611
INSTRUCTIONS TO SAY LIKE YOU

1483
00:51:54,678 --> 00:51:56,580
WILL TALK ABOUT THIS WITH YOUR

1484
00:51:56,646 --> 00:51:58,882
DOCTOR WHEN YOU GO INTO THE

1485
00:51:58,949 --> 00:52:02,152
VISIT, BECAUSE IT IS JUST A

1486
00:52:02,219 --> 00:52:02,419
SCREENER.

1487
00:52:02,486 --> 00:52:04,120
>> FLEATS TI COMMON NOW, WE ALL

1488
00:52:04,187 --> 00:52:05,322
TAKE SCREENERS AND FILL THING

1489
00:52:05,388 --> 00:52:07,324
OUT BEFORE WE GO.

1490
00:52:07,390 --> 00:52:08,325
FLEATS TI COMMON NOW.

1491
00:52:08,391 --> 00:52:09,192
THAT MAKES SENSE.

1492
00:52:09,259 --> 00:52:10,894
SPEAKING OF YOUR USABILITY, HAVE

1493
00:52:10,961 --> 00:52:13,129
YOU PUBLISHED THOSE USABILITY

1494
00:52:13,196 --> 00:52:13,463
STUDIES?

1495
00:52:13,530 --> 00:52:15,565
ARE YOUR QUESTIONS IN THE PAPER?

1496
00:52:15,632 --> 00:52:17,300
WE HAVE AN APP AND --

1497
00:52:17,367 --> 00:52:18,368
>> THE QUESTION?

1498
00:52:18,435 --> 00:52:20,136
YEAH, YEAH, I MEAN, SORRY, I

1499
00:52:20,203 --> 00:52:21,338
ONLY HAD SIX MINUTES AND I HAD

1500
00:52:21,404 --> 00:52:23,006
TO GET ALL THOSE IN THERE.

1501
00:52:23,073 --> 00:52:25,408
BUT YEAH, IT GOES THROUGH KIND

1502
00:52:25,475 --> 00:52:27,277
OF THAT WHOLE PROCESS STARTING

1503
00:52:27,344 --> 00:52:28,712
WITH LIKE THOSE FOUNDATIONAL

1504
00:52:28,778 --> 00:52:30,313
INTERVIEWS WITH THOSE CLINICIANS

1505
00:52:30,380 --> 00:52:31,882
AND THEN, YOU KNOW, TALKING WITH

1506
00:52:31,948 --> 00:52:34,851
THE MA'S AND THE PANEL AND ALL

1507
00:52:34,918 --> 00:52:36,820
OF THOSE KIND OF DIFFERENT

1508
00:52:36,887 --> 00:52:38,355
STAGES UP UNTIL THE LAST STAGE

1509
00:52:38,421 --> 00:52:41,525
WHEN WE ACTUALLY HAD THE PROALT

1510
00:52:41,591 --> 00:52:44,261
TYPES AND WE'RE USING THEM.

1511
00:52:44,327 --> 00:52:44,494
SO YEAH.

1512
00:52:44,561 --> 00:52:46,663
>> OKAY, GREAT.

1513
00:52:46,730 --> 00:52:47,964
AND THEN I DON'T REMEMBER WHY I

1514
00:52:48,031 --> 00:52:52,769
WROTE THIS DOWN, BUT I WROTE DO

1515
00:52:52,836 --> 00:52:53,637
YOU HAVE REMINDERS?

1516
00:52:53,703 --> 00:52:55,438
LIKE WAS THERE A TASK THAT THEY

1517
00:52:55,505 --> 00:52:56,740
HAVE TO TAKE AGAIN?

1518
00:52:56,806 --> 00:52:58,041
>> THAT'S A GOOD QUESTION.

1519
00:52:58,108 --> 00:53:00,010
OR JUST REMINDERS TO TAKE IT?

1520
00:53:00,076 --> 00:53:01,011
>> YEAH, RIGHT.

1521
00:53:01,077 --> 00:53:02,245
ARE THERE ANY NOTIFICATIONS?

1522
00:53:02,312 --> 00:53:03,213
>> I THINK THAT'S SOMETHING THAT

1523
00:53:03,280 --> 00:53:05,015
WE ARE GOING TO LEARN WHEN WE DO

1524
00:53:05,081 --> 00:53:07,350
THE FIELD TEST, RIGHT, IS RIGHT

1525
00:53:07,417 --> 00:53:10,053
NOW IT'S JUST A PILOT.

1526
00:53:10,120 --> 00:53:10,754
RESEARCH STUDY.

1527
00:53:10,820 --> 00:53:12,122
BUT WE HAVE TO KIND OF SEE HOW

1528
00:53:12,188 --> 00:53:14,558
THIS IS USED IN THE REAL WORLD

1529
00:53:14,624 --> 00:53:16,860
OF, YOU KNOW, YOUR CLINIC SENDS

1530
00:53:16,927 --> 00:53:18,495
YOU A MESSAGE, WHAT I, DO THIS,

1531
00:53:18,562 --> 00:53:19,596
BUT HOW MANY TIMES ARE THEY

1532
00:53:19,663 --> 00:53:20,797
ACTUALLY FILLING OUT PAPERWORK

1533
00:53:20,864 --> 00:53:24,768
BEFORE THEY COME IN, LET ALONE

1534
00:53:24,834 --> 00:53:26,636
THE COGNITIVE TEST, I THINK

1535
00:53:26,703 --> 00:53:28,138
THAT'S GOING TO BE ONE OF OUR

1536
00:53:28,204 --> 00:53:28,438
CHALLENGES.

1537
00:53:28,505 --> 00:53:36,079
>> ALL RIGHT, GREAT JOB.

1538
00:53:36,146 --> 00:53:40,216
>> WE'VE GOT ANOTHER QUESTION

1539
00:53:40,283 --> 00:53:40,450
COMING.

1540
00:53:40,517 --> 00:53:44,087
>> HI.

1541
00:53:44,154 --> 00:53:46,056
JUST TO CLARIFY, IF I UNDERSTAND

1542
00:53:46,122 --> 00:53:48,992
IT RIGHT, THAT IN THE PROCESS OF

1543
00:53:49,059 --> 00:53:50,760
DEVELOPING THIS MYCOG FOR THE

1544
00:53:50,827 --> 00:53:55,765
PUBLIC USE, ARE YOU ANTICIPATING

1545
00:53:55,832 --> 00:53:57,200
THAT THIS SPACE THAT WE HAVE TO

1546
00:53:57,267 --> 00:53:59,169
PAY FOR THOSE COMMUNITY OR BASED

1547
00:53:59,235 --> 00:54:00,737
ON INSTITUTIONAL USE OR FOR

1548
00:54:00,804 --> 00:54:03,006
THOSE CLINICS?

1549
00:54:03,073 --> 00:54:05,241
BECAUSE THIS IS AN NIH FUNDED

1550
00:54:05,308 --> 00:54:10,780
STUDY AND IT'S LIKE OPEN TO THE

1551
00:54:10,847 --> 00:54:13,817
PUBLIC?

1552
00:54:13,883 --> 00:54:15,418
>> THAT IS ALWAYS A GREAT

1553
00:54:15,485 --> 00:54:17,354
QUESTION, AND HOW DO YOU GET

1554
00:54:17,420 --> 00:54:18,254
THESE PRODUCTS?

1555
00:54:18,321 --> 00:54:20,557
RIGHT NOW THEY'RE NOT PUBLICLY

1556
00:54:20,624 --> 00:54:20,924
AVAILABLE.

1557
00:54:20,991 --> 00:54:22,292
NEITHER OF THEM.

1558
00:54:22,359 --> 00:54:24,461
MYCOG IS IN CLINICS, AND WE ARE

1559
00:54:24,527 --> 00:54:26,863
USING IT, AND THAT'S WHY I SAID,

1560
00:54:26,930 --> 00:54:29,065
YOU KNOW, WE HAVE CONTACT

1561
00:54:29,132 --> 00:54:31,067
INFORMATION, YOU CAN TALK TO US

1562
00:54:31,134 --> 00:54:34,738
ABOUT COLLABORATING WITH US.

1563
00:54:34,804 --> 00:54:38,208
AND I SAY COLLABORATING BECAUSE

1564
00:54:38,274 --> 00:54:40,577
IT'S NOT A PUBLICLY AVAILABLE

1565
00:54:40,644 --> 00:54:41,044
PRODUCT.

1566
00:54:41,111 --> 00:54:42,979
WHEN IT DOES BECOME A PUBLICLY

1567
00:54:43,046 --> 00:54:44,814
AVAILABLE PRODUCT, THERE MAY

1568
00:54:44,881 --> 00:54:47,150
VERY WELL BE A COST ASSOCIATED

1569
00:54:47,217 --> 00:54:50,120
WITH IT, AS THERE IS WITH NIH

1570
00:54:50,186 --> 00:54:51,621
TOOLBOX AND BABY TOOLBOX,

1571
00:54:51,688 --> 00:54:53,156
BECAUSE YOU HAVE TO KEEP THESE

1572
00:54:53,223 --> 00:54:55,158
THINGS UP AND YOU HAVE TO MANAGE

1573
00:54:55,225 --> 00:54:58,428
THEVMENT SO IF THERE IS ANY COST

1574
00:54:58,495 --> 00:55:00,930
DOWN THE ROAD, THAT WOULD BE FOR

1575
00:55:00,997 --> 00:55:01,564
THAT PURPOSE.

1576
00:55:01,631 --> 00:55:03,867
IT'S NOT TO MAKE A PROFIT.

1577
00:55:03,933 --> 00:55:06,403
IF YOU WANT TO TALK TO ONE OF US

1578
00:55:06,469 --> 00:55:09,572
ABOUT USING MYCOG AT YOUR

1579
00:55:09,639 --> 00:55:11,574
CLINIC, THE CHALLENGE IS GOING

1580
00:55:11,641 --> 00:55:13,810
TO BE EVEN IF YOU'RE AT AN

1581
00:55:13,877 --> 00:55:16,012
INSTITUTION THAT HAS EPIC, IT'S

1582
00:55:16,079 --> 00:55:17,213
GOING TO BE A PARTICULAR

1583
00:55:17,280 --> 00:55:20,617
INSTANCE OF EPIC, SO HAVING OUR

1584
00:55:20,684 --> 00:55:23,019
PRODUCTS TALK TO THAT EPIC

1585
00:55:23,086 --> 00:55:25,522
INSTANCE IS GOING TO, YOU KNOW,

1586
00:55:25,588 --> 00:55:28,258
REQUIRE SOME WORK.

1587
00:55:28,324 --> 00:55:29,893
SO THAT'S ONE OF THE THINGS ON

1588
00:55:29,959 --> 00:55:31,995
THINK ABOUT, WHICH I SAY, WE

1589
00:55:32,062 --> 00:55:33,496
WANT TO MAKE IT SCALABLE, SO WE

1590
00:55:33,563 --> 00:55:39,002
WANT TO MAKE IT AS EASY AS

1591
00:55:39,069 --> 00:55:43,873
POSSIBLE.

1592
00:55:43,940 --> 00:55:46,109
>> THANK YOU, EVERYONE.

1593
00:55:46,176 --> 00:55:49,379
ANY MORE QUESTIONS FROM THE

1594
00:55:49,446 --> 00:55:53,450
AUDIENCE?

1595
00:55:53,516 --> 00:55:55,752
I MAY ASK A QUICK QUESTION

1596
00:55:55,819 --> 00:55:56,753
DIRECTED TOWARDS STEPHANIE.

1597
00:55:56,820 --> 00:55:58,054
I NOTICED WHEN YOU WERE TALKING

1598
00:55:58,121 --> 00:56:03,126
ABOUT THE RESULTS THAT YOU'VE

1599
00:56:03,193 --> 00:56:05,295
SEEN YOU CAME IN A PICTURE THAT

1600
00:56:05,361 --> 00:56:06,696
WAS UNEXPPPED WE WERE TRYING TO

1601
00:56:06,763 --> 00:56:08,298
COME UP WITH POSSIBLE REASONS

1602
00:56:08,364 --> 00:56:10,133
FOR THAT, WHICH COULD INCLUDE

1603
00:56:10,200 --> 00:56:10,400
CHEATING.

1604
00:56:10,467 --> 00:56:13,303
I WAS WONDERING, PERHAPS YOU'LL

1605
00:56:13,369 --> 00:56:14,738
BE ABLE TO BETTER IT AS YOU MOVE

1606
00:56:14,804 --> 00:56:16,306
FORWARD WITH MORE PEOPLE, BUT

1607
00:56:16,372 --> 00:56:17,574
HOW DO YOU GO ASSESSING THAT

1608
00:56:17,640 --> 00:56:19,676
WITH A TASK ADMINISTERED

1609
00:56:19,743 --> 00:56:20,777
REMOTELY AND WHAT ARE SOME OF

1610
00:56:20,844 --> 00:56:22,545
THE THINGS YOU'RE THINKING ABOUT

1611
00:56:22,612 --> 00:56:25,215
AS YOU'RE THINKING ABOUT --

1612
00:56:25,281 --> 00:56:27,117
>> YOU MEAN LIKE ARE THEY

1613
00:56:27,183 --> 00:56:27,383
CHEATING?

1614
00:56:27,450 --> 00:56:27,617
>> YES.

1615
00:56:27,684 --> 00:56:29,085
>> WE DO THINK ABOUT THAT QUITE

1616
00:56:29,152 --> 00:56:30,520
A BIT.

1617
00:56:30,587 --> 00:56:31,855
SO WE DON'T HAVE A WAY TO

1618
00:56:31,921 --> 00:56:34,758
CONTROL FOR CHEATING RIGHT NOW.

1619
00:56:34,824 --> 00:56:37,660
I THINK, YOU KNOW, SOMETHING AS

1620
00:56:37,727 --> 00:56:41,264
SIMPLE AS LIKE SAYING THIS IS TO

1621
00:56:41,331 --> 00:56:42,799
SCREEN YOUR COGNITIVE HEALTH,

1622
00:56:42,866 --> 00:56:44,334
PLEASE DON'T CHEAT, I THINK CAN

1623
00:56:44,400 --> 00:56:46,336
GO A REALLY LONG WAY.

1624
00:56:46,402 --> 00:56:48,104
THAT TASK IS ADAPTED FROM THE

1625
00:56:48,171 --> 00:56:49,606
MOBILE TOOLBOX AND WE DID LOOK

1626
00:56:49,672 --> 00:56:50,273
AT THAT.

1627
00:56:50,340 --> 00:56:52,542
WE JUST PUBLISHED A PAPER ABOUT

1628
00:56:52,609 --> 00:56:54,544
THE VALIDATION OF THE ORIGINAL

1629
00:56:54,611 --> 00:56:55,845
MOBILE TOOLBOX VERSION OF THAT

1630
00:56:55,912 --> 00:56:57,647
APP AND LOOKED AT ARE WE SEEING

1631
00:56:57,714 --> 00:56:59,716
THESE KIND OF LIKE UNIFORMALLY

1632
00:56:59,783 --> 00:57:00,917
HIGH SCORES BECAUSE THEY'RE

1633
00:57:00,984 --> 00:57:04,420
WRITING IT DOWN?

1634
00:57:04,487 --> 00:57:06,156
WE DIDN'T REALLY SEE LIKE

1635
00:57:06,222 --> 00:57:08,658
DEFINITIVE EVIDENCE OF THAT, BUT

1636
00:57:08,725 --> 00:57:09,893
I HAVE THOUGHT ABOUT WAYS TO

1637
00:57:09,959 --> 00:57:12,529
LIKE HOW MIGHT WE EMBED LIKE

1638
00:57:12,595 --> 00:57:14,164
PERFORMANCE VALIDITY METRICS

1639
00:57:14,230 --> 00:57:16,800
INTO SOME OF THESE TASKS.

1640
00:57:16,866 --> 00:57:18,635
BUT YEAH, I MEAN, IT'S A GOOD

1641
00:57:18,701 --> 00:57:19,135
QUESTION.

1642
00:57:19,202 --> 00:57:20,403
WE DON'T KNOW IF THEY'RE WRITING

1643
00:57:20,470 --> 00:57:21,571
DOWN, WE DON'T KNOW IF SOMEONE

1644
00:57:21,638 --> 00:57:23,907
ELSE IS HELPING THEM, AND THAT'S

1645
00:57:23,973 --> 00:57:25,108
ANOTHER LIMITATION I THINK OF

1646
00:57:25,175 --> 00:57:28,044
LIKE REMOTELY SELF-ADMINISTERING

1647
00:57:28,111 --> 00:57:28,211
IT.

1648
00:57:28,278 --> 00:57:34,684
>> THANK YOU VERY MUCH.

1649
00:57:34,751 --> 00:57:36,386
>> RIGHT.

1650
00:57:36,452 --> 00:57:36,853
YES.

1651
00:57:36,920 --> 00:57:38,822
MANY POTENTIAL BENEFITS AND ALSO

1652
00:57:38,888 --> 00:57:40,590
SOME POTENTIAL LIMITATIONS.

1653
00:57:40,657 --> 00:57:42,192
ALL RIGHT.

1654
00:57:42,258 --> 00:57:43,293
WELL, I THINK WE'RE NEARING THE

1655
00:57:43,359 --> 00:57:45,094
END OF OUR TIME, BUT I WANT TO

1656
00:57:45,161 --> 00:57:46,596
THANK YOU ALL FOR A REALLY

1657
00:57:46,663 --> 00:57:48,498
TERRIFIC SESSION.

1658
00:57:48,565 --> 00:57:49,299
THANK YOU.

1659
00:57:49,365 --> 00:57:51,267
AND BEFORE WE PART, I ACTUAL

1660
00:57:51,334 --> 00:57:54,671
HAVE A MESSAGE, WHICH I CAN PULL

1661
00:57:54,737 --> 00:57:56,206
FROM MY PHONE AGAIN, ABOUT OUR

1662
00:57:56,272 --> 00:57:56,806
NEXT SESSION.

1663
00:57:56,873 --> 00:57:58,474
WE HAVE A FIFTEEN MINUTE BREAK

1664
00:57:58,541 --> 00:58:01,010
OR JUST OVER, CR WE MIGHT BE

1665
00:58:01,077 --> 00:58:02,345
STOPPING A MINUTE OR SO EARLY,

1666
00:58:02,412 --> 00:58:05,715
AND WE'LL BE RECONVENING AT 2

1667
00:58:05,782 --> 00:58:07,817
1W5 FOR THE SECOND -- WE'LL BE

1668
00:58:07,884 --> 00:58:11,521
RECONVENE BEING AT 2:15 FOR THE

1669
00:58:11,588 --> 00:58:13,957
SECOND PORTION OF THE CONCURRENT

1670
00:58:14,023 --> 00:58:16,559
SESSIONS, SECTION 4 IS USE OF

1671
00:58:16,626 --> 00:58:18,061
NIH TOOLBOX IN DIVERSE

1672
00:58:18,127 --> 00:58:20,496
POPULATIONS, IN BALCONY A.

1673
00:58:20,563 --> 00:58:23,867
SESSION FIVE, NIH TOOLBOX IN

1674
00:58:23,933 --> 00:58:24,667
DEVELOPMENTAL POPULATIONS,

1675
00:58:24,734 --> 00:58:25,635
TAKING PLACE IN THE ROOM WE'RE

1676
00:58:25,702 --> 00:58:27,303
IN RIGHT NOW AND SESSION 6 IS

1677
00:58:27,370 --> 00:58:30,139
THE NIH TOOLBOX ACROSS THE LIFE

1678
00:58:30,206 --> 00:58:32,008
SPAN AND IN CRITICAL

1679
00:58:32,075 --> 00:58:32,876
POPULATIONS, WHICH WILL TAKE

1680
00:58:32,942 --> 00:58:34,410
PLACE IN THE MAIN AUDITORIUM.

1681
00:58:34,477 --> 00:58:34,744
ALL RIGHT.

1682
00:58:34,811 --> 00:58:39,782
SO THANK YOU VERY MUCH,

1683
00:58:39,849 --> 00:58:40,049
EVERYONE.

1684
00:58:40,116 --> 00:58:41,851
>> ONE MORE THING.

1685
00:58:41,918 --> 00:58:44,020
IT'S IN YOUR SCHEDULES, BUT CAN

1686
00:58:44,087 --> 00:58:46,222
I MAKE A PLUG, COME TO SEE THE

1687
00:58:46,289 --> 00:58:48,524
DEMONSTRATIONS AND TRY THEM OUT.

1688
00:58:48,591 --> 00:58:49,959
WE'RE GOING TO BE AT TABLES, ASK

1689
00:58:50,026 --> 00:58:51,694
THE EXPERTS, SO PLEASE COME TALK

1690
00:58:51,761 --> 00:58:53,730
TO US.

1691
00:58:53,796 --> 00:58:56,833
>> THIS IS THE NIH TOOLBOX USE

1692
00:58:56,900 --> 00:58:58,134
IN DEVELOPMENTAL CLINICAL

1693
00:58:58,201 --> 00:58:59,235
POPULATIONS AND WE'LL GET

1694
00:58:59,302 --> 00:59:05,742
STARTED WITH DR. EMMA KHANDI

1695
00:59:05,808 --> 00:59:09,312
FROM NIH THERE, TALKING ABOUT

1696
00:59:09,379 --> 00:59:12,682
INDIVIDUALS WITH WILLIAMS

1697
00:59:12,749 --> 00:59:19,889
SYNDROME.

1698
00:59:19,956 --> 00:59:25,561
>> HI, EVERYBODY.

1699
00:59:25,628 --> 00:59:28,765
SO -- DR. EMMA CONDY.

1700
00:59:28,831 --> 00:59:29,966
I'M FROM THE INTRAMURAL PROGRAM

1701
00:59:30,033 --> 00:59:31,067
OF NIH.

1702
00:59:31,134 --> 00:59:32,468
THERE'S THE EXTRAMURAL SIDE THAT

1703
00:59:32,535 --> 00:59:33,670
DOES THE GRANT FUNDING AND THING

1704
00:59:33,736 --> 00:59:36,239
OF THAT NATURE BUT I DID MY

1705
00:59:36,306 --> 00:59:37,340
POSTDOCTORAL TRAINING HERE IN

1706
00:59:37,407 --> 00:59:39,742
THE INTRAMURAL PROGRAM WHERE WE

1707
00:59:39,809 --> 00:59:41,177
CONDUCT RESEARCH ON CAMPUS.

1708
00:59:41,244 --> 00:59:43,780
THIS IS WORK I DID DURING MY

1709
00:59:43,846 --> 00:59:45,014
POST-DOC, IF ANYONE WANTS TO

1710
00:59:45,081 --> 00:59:46,416
HEAR ABOUT TRAINING

1711
00:59:46,482 --> 00:59:48,284
OPPORTUNITIES HERE AT THE NIH

1712
00:59:48,351 --> 00:59:49,819
COME AND TALK TO ME DURING THE

1713
00:59:49,886 --> 00:59:50,386
POSTER SEETION.

1714
00:59:50,453 --> 00:59:52,422
DURING THAT TIME WE DO A LOT OF

1715
00:59:52,488 --> 00:59:53,423
MEASURE DEVELOPMENT IN

1716
00:59:53,489 --> 00:59:55,158
POPULATIONS WITH INTELLECTUAL

1717
00:59:55,224 --> 00:59:57,260
DISABILITY, SO THIS PROJECT WAS

1718
00:59:57,327 --> 00:59:58,761
SPECIFICALLY FOCUSED ON A

1719
00:59:58,828 --> 01:00:00,330
DISORDER CALLED WILLIAM SYNDROME

1720
01:00:00,396 --> 01:00:02,398
THAT WE COLLABORATE WITH ONE OF

1721
01:00:02,465 --> 01:00:05,134
OUR COLLEAGUES IN NHLBI WHICH IS

1722
01:00:05,201 --> 01:00:07,637
THE HEART LUNG AND BLOOD

1723
01:00:07,704 --> 01:00:08,204
INSTITUTE.

1724
01:00:08,271 --> 01:00:09,939
SO WILLIAMS SYNDROME THE

1725
01:00:10,006 --> 01:00:11,908
BEHAVIORAL PHENOTYPE, IT IS A

1726
01:00:11,975 --> 01:00:13,009
NEURO GENETIC CONDITION CAUSED

1727
01:00:13,076 --> 01:00:15,712
BY A MICRODELETION ON CHROMOSOME

1728
01:00:15,778 --> 01:00:17,480
7 SO THE PARTICIPANTS IN THIS

1729
01:00:17,547 --> 01:00:18,781
STUDY WERE ENROLLED AS PART OF

1730
01:00:18,848 --> 01:00:20,283
THE NATURAL HISTORY STUDY WHERE

1731
01:00:20,350 --> 01:00:23,186
THEY COME IN APPROXIMATELY ONCE

1732
01:00:23,252 --> 01:00:24,921
A YEAR TO SEE BEHAVIORAL

1733
01:00:24,988 --> 01:00:25,755
COGNITIVELY HOW THEY'RE DOING AS

1734
01:00:25,822 --> 01:00:27,657
WELL AS A FULL MEDICAL WORK-UP

1735
01:00:27,724 --> 01:00:30,626
BY THE NHLB I TEAM.

1736
01:00:30,693 --> 01:00:32,562
AND THEIR NEUROPSYCHIATRIC

1737
01:00:32,628 --> 01:00:33,896
PROFILE INCLUDES MILD TO

1738
01:00:33,963 --> 01:00:34,764
MODERATE INCIDENT LCT YOU'LL

1739
01:00:34,831 --> 01:00:37,600
DISABILITY BUT IT ALSO INCLUDES

1740
01:00:37,667 --> 01:00:39,469
ANXIETY AS WELL AS ATTENTIONAL

1741
01:00:39,535 --> 01:00:40,470
DEFICITS THAT WE THOUGHT WOULD

1742
01:00:40,536 --> 01:00:42,438
BE INTERESTING TO TRY TO INDEX

1743
01:00:42,505 --> 01:00:47,243
USING THE NIH TOOLBOX.

1744
01:00:47,310 --> 01:00:49,112
SO TO DO THAT, WE DECIDED THAT

1745
01:00:49,178 --> 01:00:50,747
THE EARLY CHILDHOOD COGNITIVE

1746
01:00:50,813 --> 01:00:52,048
BATTERY WOULD BE THE MOST

1747
01:00:52,115 --> 01:00:54,150
APPROPRIATE SET OF TASKS TO USE

1748
01:00:54,217 --> 01:00:55,785
WITH THESE PARTICULAR

1749
01:00:55,852 --> 01:00:58,955
PARTICIPANTS, SO WE ADMINISTERED

1750
01:00:59,022 --> 01:01:03,659
THE INHIBITOR RI CONTROL TAX

1751
01:01:03,726 --> 01:01:05,094
TASK -- FLANK ERIN HIB TO HER

1752
01:01:05,161 --> 01:01:06,963
CONTROL AND ATTENTION TEST,

1753
01:01:07,030 --> 01:01:09,899
PICTURE SEQUENCE MEMORY,

1754
01:01:09,966 --> 01:01:12,201
DIMENSIONAL, WE SKIPPED OVER THE

1755
01:01:12,268 --> 01:01:13,736
PVT BECAUSE WE WERE DOING THAT

1756
01:01:13,803 --> 01:01:13,970
ALREADY.

1757
01:01:14,037 --> 01:01:15,671
WE DID THE OTHER THREE WITH ALL

1758
01:01:15,738 --> 01:01:17,006
OF THEM AND WANTED TO LOOK

1759
01:01:17,073 --> 01:01:18,341
SPECIFICALLY AT THE FEASIBILITY

1760
01:01:18,408 --> 01:01:21,277
OF ADMINISTERING THOSE FOUR

1761
01:01:21,344 --> 01:01:22,712
TESTS IN THE EARLY CHILDHOOD

1762
01:01:22,779 --> 01:01:24,313
COGNITION BATTERY AS WELL AS

1763
01:01:24,380 --> 01:01:25,348
WHETHER OR NOT PERFORMANCE ON

1764
01:01:25,415 --> 01:01:26,382
THOSE TASKS CORRELATED WITH ANY

1765
01:01:26,449 --> 01:01:28,184
OF THE OTHER COGNITIVE VARIABLES

1766
01:01:28,251 --> 01:01:29,619
THAT WE WERE GETTING FROM THEM

1767
01:01:29,685 --> 01:01:30,820
BECAUSE THEY WERE UNDERGOING

1768
01:01:30,887 --> 01:01:33,022
FULL IQ TESTING AS WELL AS A

1769
01:01:33,089 --> 01:01:36,392
VARIETY OF OTHER THINGS LIKE THE

1770
01:01:36,459 --> 01:01:38,528
CBCL AND OTHER COGNITIVE AND

1771
01:01:38,594 --> 01:01:41,931
BEHAVIORAL TESTS OR ASSESSMENTS.

1772
01:01:41,998 --> 01:01:44,534
SO WE HAD 47 PARTICIPANTS WITH

1773
01:01:44,600 --> 01:01:46,502
WILLIAMS SYNDROME DIAGNOSIS COME

1774
01:01:46,569 --> 01:01:48,037
AND UNDERGOING TESTING.

1775
01:01:48,104 --> 01:01:49,906
WILLIAMS SYNDROME WAS CONFIRMED

1776
01:01:49,972 --> 01:01:52,208
VIA MOLECULAR TESTING BY NHLBI

1777
01:01:52,275 --> 01:01:52,942
TEST LG.

1778
01:01:53,009 --> 01:01:54,710
THEY WERE BETWEEN FOUR AND 50

1779
01:01:54,777 --> 01:01:56,512
YEARS OLD BECAUSE AS I MENTIONED

1780
01:01:56,579 --> 01:01:57,880
THIS WAS A NATURAL HISTORY

1781
01:01:57,947 --> 01:01:59,982
STUDY, SO THERE REALLY WASN'T AN

1782
01:02:00,049 --> 01:02:01,717
AGE LIMIT, IT WAS JUST WHOEVER

1783
01:02:01,784 --> 01:02:02,952
WAS AVAILABLE TO COME IN.

1784
01:02:03,019 --> 01:02:04,487
MEDIAN AGE WAS AROUND 20 YEARS

1785
01:02:04,554 --> 01:02:04,987
OF AGE.

1786
01:02:05,054 --> 01:02:09,625
THE MAJORITY HAD A FULL SCALE IQ

1787
01:02:09,692 --> 01:02:11,794
OF LESS THAN 70, WOULD MEET THAT

1788
01:02:11,861 --> 01:02:12,895
CUTOFF FOR INTELLECTUAL

1789
01:02:12,962 --> 01:02:15,631
DISABILITY BUT THE MEDIAN WAS

1790
01:02:15,698 --> 01:02:16,399
AROUND 58.

1791
01:02:16,466 --> 01:02:18,367
AND NOTABLY INDIVIDUALS WITH

1792
01:02:18,434 --> 01:02:19,902
WILLIAMS SYNDROME HAVE

1793
01:02:19,969 --> 01:02:22,071
RELATIVELY PRESERVED VERBAL

1794
01:02:22,138 --> 01:02:23,940
SKILLS, WHICH FOR THE NIH

1795
01:02:24,006 --> 01:02:27,310
TOOLBOX MAKES THEM A

1796
01:02:27,376 --> 01:02:29,178
PARTICULARLY GREAT CANDIDATE

1797
01:02:29,245 --> 01:02:32,014
NEURO GENETIC CONDITION FOR

1798
01:02:32,081 --> 01:02:32,381
ASSESSMENT.

1799
01:02:32,448 --> 01:02:34,383
SO THEY UNDERWENT NEURAL

1800
01:02:34,450 --> 01:02:36,352
DEVELOPMENTAL PHENOTYPING, WHICH

1801
01:02:36,419 --> 01:02:37,553
INCLUDED DEMOGRAPHICS ARE

1802
01:02:37,620 --> 01:02:39,422
DEVELOPMENTAL HISTORY AND IQ

1803
01:02:39,489 --> 01:02:40,423
TESTING AS WELL AS THIS

1804
01:02:40,490 --> 01:02:41,724
CHILDHOOD, EARLY CHILDHOOD

1805
01:02:41,791 --> 01:02:45,761
COGNITION BATTERY.

1806
01:02:45,828 --> 01:02:46,796
OUR ANALYTIC APPROACH WAS TO

1807
01:02:46,863 --> 01:02:48,931
LOOK THE AFEASIBILITY VIA

1808
01:02:48,998 --> 01:02:50,800
COMPLETION RATES, WHO WOULD ABLE

1809
01:02:50,867 --> 01:02:53,636
TO COMEET TASKS AS WELL AS

1810
01:02:53,703 --> 01:02:56,038
VEELINGS SHIPS WITH OTHER

1811
01:02:56,105 --> 01:02:57,340
VARIABLE -- RELATIONSHIPS WITH

1812
01:02:57,406 --> 01:03:01,310
OTHER VARIABLES, UNPRACTICED

1813
01:03:01,377 --> 01:03:05,181
SCORES WITH NONVERBAL IQ AND

1814
01:03:05,248 --> 01:03:07,150
CHRONOLOGICAL AGE.

1815
01:03:07,216 --> 01:03:13,589
SO FOR THE FLANK ERIN HIB TO HEY

1816
01:03:13,656 --> 01:03:17,560
CONTROL TASK, 98 -- LOOKING AT

1817
01:03:17,627 --> 01:03:19,862
WHETHER THE TASKS WERE COMING UP

1818
01:03:19,929 --> 01:03:21,797
AT FLOOR FOR THE AGE CORRECTED

1819
01:03:21,864 --> 01:03:25,001
SCORES -- A 89% COMPLETION RATE.

1820
01:03:25,067 --> 01:03:27,069
NIH TOOLBOX IS NORMED SUCH THAT

1821
01:03:27,136 --> 01:03:28,471
YOU GET THREE STANDARD

1822
01:03:28,538 --> 01:03:31,007
DEVIATIONS BELOW THE MEAN SCORE

1823
01:03:31,073 --> 01:03:33,543
AND THEN ONE POINT IS THE LOWEST

1824
01:03:33,609 --> 01:03:34,944
SCORE YOU CAN GET IF YOU'RE

1825
01:03:35,011 --> 01:03:36,145
LOOKING AT THE AGE CORRECTED

1826
01:03:36,212 --> 01:03:36,379
SCORE.

1827
01:03:36,445 --> 01:03:38,114
SO THAT'S A 54.

1828
01:03:38,181 --> 01:03:40,082
NOW, CONVERSELY, MOST STANDARD

1829
01:03:40,149 --> 01:03:41,751
IQ TESTS GO DOWN TO FOUR

1830
01:03:41,817 --> 01:03:43,619
STANDARD DEVIATIONS, SO WE WERE

1831
01:03:43,686 --> 01:03:44,520
PARTICULARLY CONCERNED ABOUT

1832
01:03:44,587 --> 01:03:47,356
FLOOR EFFECTS WITH THE NIH

1833
01:03:47,423 --> 01:03:49,091
TOOLBOX TEST, WHAT WE FOUND WAS

1834
01:03:49,158 --> 01:03:51,460
THAT FOR THE FLANKER OF THE 89%

1835
01:03:51,527 --> 01:03:53,062
THAT WERE ABLE TO SUCCESSFULLY

1836
01:03:53,129 --> 01:03:55,665
COMPLETE THE TASK, 27% WERE

1837
01:03:55,731 --> 01:03:57,767
SCORING AT THAT 54 OF THE FLOOR

1838
01:03:57,833 --> 01:03:59,302
WHEN WE LOOKED AT THE AGE

1839
01:03:59,368 --> 01:03:59,702
SCORES.

1840
01:03:59,769 --> 01:04:02,905
SO BUT OVERALL A PRETTY HIGH

1841
01:04:02,972 --> 01:04:04,740
COMPLETION RATE FOR OUR WILLIAMS

1842
01:04:04,807 --> 01:04:06,275
SYNDROME PATIENTS ON THIS TASK

1843
01:04:06,342 --> 01:04:07,944
AND THEN THE SCATTERPLOT ON THE

1844
01:04:08,010 --> 01:04:09,278
RIGHT-HAND SIDE IS SHOWING THE

1845
01:04:09,345 --> 01:04:11,013
AGE CORRECTED SCORES IN BLACK

1846
01:04:11,080 --> 01:04:16,485
WHERE YOU SEE THAT SCORE FOR

1847
01:04:16,552 --> 01:04:17,787
PARTICIPANTS OVER THE AGE OF 20

1848
01:04:17,853 --> 01:04:19,755
AND THEN COMPARED TO THE

1849
01:04:19,822 --> 01:04:20,523
UNCORRECTED STANDARD SCORES

1850
01:04:20,590 --> 01:04:23,259
WHICH ACT MORE AS A KIND OF

1851
01:04:23,326 --> 01:04:24,694
CHANGE SCORE BEING RIGHT, SO

1852
01:04:24,760 --> 01:04:26,229
THEY CAN'T NECESSARILY BE

1853
01:04:26,295 --> 01:04:27,096
COMPARED BETWEEN SUBJECTS

1854
01:04:27,163 --> 01:04:28,064
BECAUSE WE'RE NOT CONTROLLING

1855
01:04:28,130 --> 01:04:29,932
FOR AGE WITH THESE SCORES, BUT

1856
01:04:29,999 --> 01:04:31,567
WITHIN A SUBJECT COULD BE

1857
01:04:31,634 --> 01:04:33,102
HELPFUL TO TELL US IF THEIR

1858
01:04:33,169 --> 01:04:35,104
SKILLS ARE INCREASING OVER TIME.

1859
01:04:35,171 --> 01:04:36,939
AND THOSE UNCORRECTED STANDARD

1860
01:04:37,006 --> 01:04:38,374
SCORES SHOW A SLIGHTLY DIFFERENT

1861
01:04:38,441 --> 01:04:40,309
SHAPE IN OUR PARTICIPANTS THAN

1862
01:04:40,376 --> 01:04:42,979
THE AGE CORRECTED SCORES DID.

1863
01:04:43,045 --> 01:04:45,948
AND THAT'S HIGHLIGHTED.

1864
01:04:46,015 --> 01:04:49,218
THEN ON THE DIMENSIONAL CARD

1865
01:04:49,285 --> 01:04:51,954
SORT TASK, ADMINISTERED TO 47

1866
01:04:52,021 --> 01:04:54,257
SUBJECTS, AGAIN AN 89%

1867
01:04:54,323 --> 01:04:56,259
COMPLETION RATE, ABOUT 19%

1868
01:04:56,325 --> 01:04:57,426
COMPLETED AT FLOOR, SO AGAIN

1869
01:04:57,493 --> 01:04:58,761
IT'S OCCURRING IN THAT SAME

1870
01:04:58,828 --> 01:05:00,196
SUBSET OF INDIVIDUALS THAT ARE

1871
01:05:00,263 --> 01:05:02,265
AROUND AGE 20 AND SOLDIER THE

1872
01:05:02,331 --> 01:05:03,699
ADULTS SEEM PARTICULARLY

1873
01:05:03,766 --> 01:05:04,800
AFFECTED BY THIS.

1874
01:05:04,867 --> 01:05:07,203
AND AGAIN, ON THE RIGHT-HAND

1875
01:05:07,270 --> 01:05:09,272
SIDE, YOU'RE SEEING IN BLACK THE

1876
01:05:09,338 --> 01:05:11,007
AGE CORRECTED STANDARD SCORES

1877
01:05:11,073 --> 01:05:12,675
VERSUS THEIR UNCORRECTED

1878
01:05:12,742 --> 01:05:15,511
STANDARD SCORES, SO A SLIGHTLY

1879
01:05:15,578 --> 01:05:16,412
DIFFERENT LOOKING CURVE.

1880
01:05:16,479 --> 01:05:18,147
THEN FINALLY, THE PICTURE

1881
01:05:18,214 --> 01:05:19,548
SEQUENCE MEMORY TEST DID NOT

1882
01:05:19,615 --> 01:05:21,017
APPEAR TO SHOWFLOOR EFFECT.

1883
01:05:21,083 --> 01:05:23,853
SO WE GOT AGAIN AN 89%

1884
01:05:23,919 --> 01:05:24,954
COMPLETION RATE HERE.

1885
01:05:25,021 --> 01:05:28,024
HIGH COMPLETION RATES ACROSS ALL

1886
01:05:28,090 --> 01:05:29,225
THREE TASKS, HOWEVER, WE DIDN'T

1887
01:05:29,292 --> 01:05:31,494
SEE THIS ISSUE OF OUR

1888
01:05:31,560 --> 01:05:32,795
PARTICIPANTS SCORING AT A FLOOR

1889
01:05:32,862 --> 01:05:38,968
ON THIS TASK, AND AGAIN, YOU CAN

1890
01:05:39,035 --> 01:05:40,936
SEE ON THE SCATTERPLOT IN THE

1891
01:05:41,003 --> 01:05:45,408
BLUE IS OUR UNCORRECTED SCORE

1892
01:05:45,474 --> 01:05:47,610
VERSUS AGE CORRECTED STANDARD

1893
01:05:47,677 --> 01:05:48,377
SCORES IS BLACK.

1894
01:05:48,444 --> 01:05:51,414
THEN IF WE LOOK ACROSS ALL THREE

1895
01:05:51,480 --> 01:05:54,383
TASKS, AGAIN ABOUT 79% COMPLETED

1896
01:05:54,450 --> 01:05:56,385
ALL THREE TASKS.

1897
01:05:56,452 --> 01:05:57,820
ONLY ONE PARTICIPANT WAS UNABLE

1898
01:05:57,887 --> 01:05:59,955
TO COMPLETE ANY TASK, RIGHT?

1899
01:06:00,022 --> 01:06:01,924
SO OUT OF OUR ENTIRE SAMPLE OF

1900
01:06:01,991 --> 01:06:03,626
47, ONE PARTICIPANT JUST

1901
01:06:03,693 --> 01:06:05,027
COULDN'T ENGAGE WITH THE iPAD

1902
01:06:05,094 --> 01:06:07,663
IN A WAY THAT WE FELT WAS

1903
01:06:07,730 --> 01:06:10,299
APPROPRIATE TO CONSIDER A VALID

1904
01:06:10,366 --> 01:06:10,833
SCORE.

1905
01:06:10,900 --> 01:06:13,135
HOWEVER, ANY OTHER MISSING DATA

1906
01:06:13,202 --> 01:06:15,971
WAS NOT COMING, THAT # 9%

1907
01:06:16,038 --> 01:06:17,840
COMPLETION, IT WASN'T THAT THE

1908
01:06:17,907 --> 01:06:20,042
SAME PEOPLE HAD FAILING FOR THE

1909
01:06:20,109 --> 01:06:21,544
THREE TESTS.

1910
01:06:21,610 --> 01:06:23,079
AND MOST OF THE INVALID

1911
01:06:23,145 --> 01:06:25,147
ADMINISTRATIONS IN THIS SAMPLE

1912
01:06:25,214 --> 01:06:26,916
SEEMED TO BE TO AN INABILITY TO

1913
01:06:26,982 --> 01:06:27,950
PASS THE PRACTICE.

1914
01:06:28,017 --> 01:06:29,418
SO IT WAS THAT THEY JUST NEVER

1915
01:06:29,485 --> 01:06:31,721
GOT EVEN TO THE SCORED PART OF

1916
01:06:31,787 --> 01:06:34,123
THE TEST BECAUSE FOR EXAMPLE ON

1917
01:06:34,190 --> 01:06:35,891
THE DIMENSIONAL CHANGE CARD SORT

1918
01:06:35,958 --> 01:06:38,294
THEY NEVER GOT PAST THE SIMPLE

1919
01:06:38,361 --> 01:06:43,332
TRAINING OF SHAPE VERSUS COLOR.

1920
01:06:43,399 --> 01:06:44,834
THEN WHEN WE LOOK AT

1921
01:06:44,900 --> 01:06:45,701
RELATIONSHIPS WITH SOME OF THE

1922
01:06:45,768 --> 01:06:49,805
OTHER VARIABLES IN OUR SAMPLE,

1923
01:06:49,872 --> 01:06:53,943
SPECIFICALLY AGE CORRECT

1924
01:06:54,009 --> 01:06:55,244
STANDARD SCORES VERSUS

1925
01:06:55,311 --> 01:06:56,912
CHRONOLOGICAL AGE OF NONVERBAL

1926
01:06:56,979 --> 01:06:59,115
IQ WE FOUND THAT AGE CORRELATED

1927
01:06:59,181 --> 01:07:00,983
HIGHLY WITH THE FLANKER AGE

1928
01:07:01,050 --> 01:07:02,485
CORRECTED STANDARD SCORE IN THIS

1929
01:07:02,551 --> 01:07:05,354
SAMPLE NEGATIVELY, SO AS YOU HAD

1930
01:07:05,421 --> 01:07:06,489
PARTICIPANTS WITH HIGHER AGES

1931
01:07:06,555 --> 01:07:07,990
WERE SHOWING LOWER SCORES, WHICH

1932
01:07:08,057 --> 01:07:08,758
TRACKS WITH THE FACT THAT WE

1933
01:07:08,824 --> 01:07:10,192
WERE SEEING THOSE FOUR EFFECTS

1934
01:07:10,259 --> 01:07:11,627
FOR OUR OLDER PARTICIPANTS, AND

1935
01:07:11,694 --> 01:07:14,363
THEN YOU SEE SIMILAR TREND BUT

1936
01:07:14,430 --> 01:07:16,966
NOT TO THE SAME EXTENT IN THE

1937
01:07:17,032 --> 01:07:19,935
DCCS WHERE WE SAW A CORRELATION

1938
01:07:20,002 --> 01:07:22,138
OF NEGATIVE .45.

1939
01:07:22,204 --> 01:07:24,106
AND THEN THERE WAS ALSO A

1940
01:07:24,173 --> 01:07:25,741
RELATIONSHIP BETWEEN DCCS AND

1941
01:07:25,808 --> 01:07:27,643
THE FLANKER AGE CORRECTED

1942
01:07:27,710 --> 01:07:29,311
STANDARD SCORES IN THE POSITIVE

1943
01:07:29,378 --> 01:07:30,479
DIRECTION WHICH IS NOT

1944
01:07:30,546 --> 01:07:32,381
SURPRISING SINCE THEY ARE MOST

1945
01:07:32,448 --> 01:07:33,716
MEASURING EXECUTIVE FUNCTION.

1946
01:07:33,783 --> 01:07:35,117
HOWEVER, THE PART THAT WE WERE A

1947
01:07:35,184 --> 01:07:36,318
BET MORE CONCERNED ABOUT WAS

1948
01:07:36,385 --> 01:07:40,389
THAT NONVERBAL IQ DID NOT

1949
01:07:40,456 --> 01:07:45,961
CORRELATE WITH ANY OF THE NIH

1950
01:07:46,028 --> 01:07:47,496
TOOLBOX SCORES WHICH WAS A

1951
01:07:47,563 --> 01:07:51,233
LITTLE BIT OF A CONCERN FOR US.

1952
01:07:51,300 --> 01:07:52,935
AND THAT'S AGAIN SHOWING THAT IT

1953
01:07:53,002 --> 01:07:57,706
DID NOT CORRELATE.

1954
01:07:57,773 --> 01:08:01,310
SO OVERALL WE FOUND GOOD

1955
01:08:01,377 --> 01:08:05,481
FEASIBILITY OF THE FLANK EEEC

1956
01:08:05,548 --> 01:08:07,550
AND DCCS IN WILLIAMS WITH A

1957
01:08:07,616 --> 01:08:09,318
POPULATION WITH MILD TO MODERATE

1958
01:08:09,385 --> 01:08:10,119
DISABILITY, WE HAD SOME CONCERNS

1959
01:08:10,186 --> 01:08:11,620
WITH USING AGE CRECTSDZ STANDARD

1960
01:08:11,687 --> 01:08:13,055
SCORES IN THIS GROUP

1961
01:08:13,122 --> 01:08:14,557
PARTICULARLY FOR THE FRANKER AND

1962
01:08:14,623 --> 01:08:16,992
THE DCCS BECAUSE OF THOSE FLOOR

1963
01:08:17,059 --> 01:08:18,194
EFFECTS THAT WE OBSERVED AS WELL

1964
01:08:18,260 --> 01:08:20,463
AS THE PRETTY NOTABLE NEGATIVE

1965
01:08:20,529 --> 01:08:24,300
CORRELATIONS WITH AGE, AND NO

1966
01:08:24,366 --> 01:08:25,835
CORRELATIONS WITH VERBAL IQ,

1967
01:08:25,901 --> 01:08:27,269
WHICH AGAIN INDICATES THAT

1968
01:08:27,336 --> 01:08:29,038
PERHAPS IT'S NOT SENSITIVE

1969
01:08:29,104 --> 01:08:31,307
ENOUGH TO BE ABLE AT THE LOWER

1970
01:08:31,373 --> 01:08:33,943
END OF THE SCALE TO BE PICKING

1971
01:08:34,009 --> 01:08:37,813
UP ON ACTUAL SKILLS.

1972
01:08:37,880 --> 01:08:38,414
THAT'S IT.

1973
01:08:38,481 --> 01:08:48,657
THANK YOU.

1974
01:08:54,830 --> 01:08:57,533
>> THANK YOU SO MUCH THE OUR

1975
01:08:57,600 --> 01:09:01,036
NEXT SPEAKER WILL BE TREY AHRUN

1976
01:09:01,103 --> 01:09:02,471
FROM VIRGINIA COMMONWEALTH

1977
01:09:02,538 --> 01:09:03,038
UNIVERSITY TALKING ABOUT IN

1978
01:09:03,105 --> 01:09:04,874
DEPTH ANALYSIS OF FLUID

1979
01:09:04,940 --> 01:09:07,409
COGNITION IN BOYS WITH DUCHENNE

1980
01:09:07,476 --> 01:09:16,485
MUSCULAR DYSTROPHY.

1981
01:09:16,552 --> 01:09:16,785
SHREYA ARUN.

1982
01:09:16,852 --> 01:09:17,920
>> HI, EVERYONE.

1983
01:09:17,987 --> 01:09:24,793
MY NAME IS SHREYA ARUN, FROM

1984
01:09:24,860 --> 01:09:26,328
VCA, I'LL BE TALKING TO YOU

1985
01:09:26,395 --> 01:09:28,731
ABOUT FLUID COGNITION IN BOYS

1986
01:09:28,797 --> 01:09:29,465
WITH DUCHENNE MUSCULAR

1987
01:09:29,532 --> 01:09:29,732
DYSTROPHY.

1988
01:09:29,798 --> 01:09:31,433
TO GIVE AN OVERVIEW ON THE

1989
01:09:31,500 --> 01:09:33,335
DISEASE, IT'S NAMED AFTER

1990
01:09:33,402 --> 01:09:34,904
DR. DUCHENNE WHO IN 1861

1991
01:09:34,970 --> 01:09:37,106
DESCRIBED A COHORT OF YOUNG

1992
01:09:37,172 --> 01:09:38,841
CHILDREN, 24 BOYS AND ONE GIRL,

1993
01:09:38,908 --> 01:09:40,609
WITH EXTENSIVE MUSCLE WASTING,

1994
01:09:40,676 --> 01:09:42,444
SPEECH DELAY AND A DULL

1995
01:09:42,511 --> 01:09:44,113
COGNITIVE AFFECT.

1996
01:09:44,179 --> 01:09:49,485
THEN IN 1987 LOUIS KUNKEL

1997
01:09:49,552 --> 01:09:57,459
DEFINED DMD GENE IN HUMANS X

1998
01:09:57,526 --> 01:10:02,398
CHROMOSOME C ABSENCE OF

1999
01:10:02,464 --> 01:10:03,832
DYSTROPHIN -- DMD CHARACTERIZED

2000
01:10:03,899 --> 01:10:10,706
BY THE ABSENCE OF DYSTROPHIN

2001
01:10:10,773 --> 01:10:11,607
ANDLESS SUBSEQUENT RESEARCH

2002
01:10:11,674 --> 01:10:13,042
FOCUS ODD SKELETAL MUSCLE

2003
01:10:13,108 --> 01:10:14,610
SYMPTOMS, HOWEVER, OUR FOCUS IS

2004
01:10:14,677 --> 01:10:15,578
ON COGNITION.

2005
01:10:15,644 --> 01:10:17,313
THROUGH STAR NET A SURVEILLANCE

2006
01:10:17,379 --> 01:10:18,847
PROGRAM THAT MONITORS PATIENTS

2007
01:10:18,914 --> 01:10:20,716
WITH DMD ACROSS THE COUNTRY, WE

2008
01:10:20,783 --> 01:10:22,685
KNOW THAT PATIENTS EXPERIENCE

2009
01:10:22,751 --> 01:10:24,553
SEVERE DELAYS IN GROSS MOTOR

2010
01:10:24,620 --> 01:10:26,422
SKILLS, SPEECH AND LANGUAGE.

2011
01:10:26,488 --> 01:10:28,157
WE ALSO KNOW THAT THEY HAVE HIGH

2012
01:10:28,223 --> 01:10:30,125
RATES OF SCHOOL GRADE

2013
01:10:30,192 --> 01:10:32,127
REPETITION, ESPECIALLY IN THOSE

2014
01:10:32,194 --> 01:10:33,529
RECEIVING SPEECH THERAPY.

2015
01:10:33,596 --> 01:10:35,297
THEY ALSO UNDERPERFORM

2016
01:10:35,364 --> 01:10:36,632
ACADEMICALLY WHEN COMPARED TO

2017
01:10:36,699 --> 01:10:39,134
THEIR PEERS AND HAVE -- AND

2018
01:10:39,201 --> 01:10:40,336
EXPERIENCE HIGHER LEVEL OF

2019
01:10:40,402 --> 01:10:41,203
SCHOOL RELATED STRESS.

2020
01:10:41,270 --> 01:10:43,505
IN LATER YEARS, THEY HAVE

2021
01:10:43,572 --> 01:10:44,607
TROUBLE FINDING VOCATIONAL

2022
01:10:44,673 --> 01:10:46,008
OPPORTUNITIES DUE TO THE

2023
01:10:46,075 --> 01:10:49,645
PROGRESSION OF THE DISEASE.

2024
01:10:49,712 --> 01:10:52,247
SO THE CDC SUPPORTED CARE

2025
01:10:52,314 --> 01:10:55,117
GUIDELINES FOR DMD REGARDING

2026
01:10:55,184 --> 01:10:56,218
PSYCHOSOCIAL CARE RECOMMENDS

2027
01:10:56,285 --> 01:10:58,187
THAT PATIENTS BE ASSESSED BY A

2028
01:10:58,253 --> 01:10:59,588
NEURO PSYCHOLOGIST THROUGHOUT

2029
01:10:59,655 --> 01:11:01,123
THEIR LIFE SPAN, WITH A HIGHER

2030
01:11:01,190 --> 01:11:03,993
RISK FOR LEARNING AND

2031
01:11:04,059 --> 01:11:05,194
INTELLECTUAL DISABILITIES, IT'S

2032
01:11:05,260 --> 01:11:06,829
REALLY IMPORTANT TO SCREEN AND

2033
01:11:06,895 --> 01:11:08,564
ASSESS THEM FOR THESE CONDITIONS

2034
01:11:08,631 --> 01:11:11,433
TO PROVIDE EARLY INTERVENTION.

2035
01:11:11,500 --> 01:11:13,302
HOWEVER, DUE TO HIGH

2036
01:11:13,369 --> 01:11:14,536
OUT-OF-POCKET COSTS AND LACK OF

2037
01:11:14,603 --> 01:11:16,805
ACCESS TO SPECIALISTS, MORE THAN

2038
01:11:16,872 --> 01:11:19,241
75% OF DMD PATIENTS HAVE NEVER

2039
01:11:19,308 --> 01:11:22,745
BEEN ASSESSED BY A NEURO

2040
01:11:22,811 --> 01:11:24,380
PSYCHOLOGIST.

2041
01:11:24,446 --> 01:11:26,548
SO ONLY IN MORE RECENT YEARS

2042
01:11:26,615 --> 01:11:28,317
HAVE STUDIES BERN FOCUSED ON

2043
01:11:28,384 --> 01:11:29,985
COGNITION IN DMD.

2044
01:11:30,052 --> 01:11:31,820
BUT THESE STUDIES HAVE ALL BEEN

2045
01:11:31,887 --> 01:11:34,657
FOIKSED ON IQ OR IQ BASED

2046
01:11:34,723 --> 01:11:34,990
MEASURES.

2047
01:11:35,057 --> 01:11:39,128
ONLY ONE PAST STUDY COMPLETED IN

2048
01:11:39,194 --> 01:11:40,796
2019 UTILIZED A SUBSET OF THE

2049
01:11:40,863 --> 01:11:43,198
NIH COGNITION TOOLBOX AND THEY

2050
01:11:43,265 --> 01:11:45,067
FOUND THAT THOSE WITH DISTAL

2051
01:11:45,134 --> 01:11:47,603
MUTATIONS IN THE DMD GENE HAD

2052
01:11:47,670 --> 01:11:48,871
SIGNIFICANTLY LOWER SCORES IN

2053
01:11:48,937 --> 01:11:51,073
EXECUTIVE FUNCTIONING AND

2054
01:11:51,140 --> 01:11:51,974
WORKING MEMORY.

2055
01:11:52,041 --> 01:11:53,942
THIS IS SUPPORTED BY PATIENT AND

2056
01:11:54,009 --> 01:11:55,577
PARENT REPORTS THAT THOSE WITH

2057
01:11:55,644 --> 01:11:57,346
DISTAL MUTATIONS TYPICALLY HAVE

2058
01:11:57,413 --> 01:12:02,151
A HIGHER NEURO DEVELOPMENT --

2059
01:12:02,217 --> 01:12:02,685
SORRY.

2060
01:12:02,751 --> 01:12:04,653
THEY TYPICALLY HAVE A HIGHER

2061
01:12:04,720 --> 01:12:07,823
BURDEN OF DISEASE.

2062
01:12:07,890 --> 01:12:10,893
AND OTHER STUDIES ALSO NOTED

2063
01:12:10,959 --> 01:12:15,397
THAT THOSE WITH DMD HAVE POOR

2064
01:12:15,464 --> 01:12:16,932
VISUAL-SPATIAL ATTENTION SKILLS.

2065
01:12:16,999 --> 01:12:19,134
OUR STUDY WANTED TO FIND OUT

2066
01:12:19,201 --> 01:12:20,803
WHETHER DISTAL MUTATIONS ARE

2067
01:12:20,869 --> 01:12:22,337
MORE PSYCHOMETRICALLY AFFECTED

2068
01:12:22,404 --> 01:12:23,672
IN PROXIMAL MUTATIONS AND WE

2069
01:12:23,739 --> 01:12:26,075
ALSO WANTED TO ASSESS WHETHER

2070
01:12:26,141 --> 01:12:30,245
THE NIH BATTERY COGNITIVE

2071
01:12:30,312 --> 01:12:32,514
TOOLBOX WOULD BE BETTER IN COG

2072
01:12:32,581 --> 01:12:34,049
DETECTIVE DEFICITS KNOWN TO BE

2073
01:12:34,116 --> 01:12:36,351
AFFECTED BY DMD.

2074
01:12:36,418 --> 01:12:38,987
SO WE CHOSE THE COGNITION

2075
01:12:39,054 --> 01:12:40,289
BATTERY TOOLBOX BECAUSE IT'S A

2076
01:12:40,355 --> 01:12:42,391
SHORT ASSESSMENT THAT ASSESSES

2077
01:12:42,458 --> 01:12:44,993
SEVEN DOMAINS OF COGNITION AND

2078
01:12:45,060 --> 01:12:46,762
PROVIDES THREE SCORES, THE TOTAL

2079
01:12:46,829 --> 01:12:48,297
COMPOSITE SCORE, FLUID COGNITION

2080
01:12:48,363 --> 01:12:49,965
SCORE AND THE CRYSTALLIZED

2081
01:12:50,032 --> 01:12:51,366
COGNITION SCORE.

2082
01:12:51,433 --> 01:12:53,235
CRYSTALLIZED COGNITION IS

2083
01:12:53,302 --> 01:12:54,670
COMPOSED OF VOCABULARY AND

2084
01:12:54,737 --> 01:12:55,971
READING AND FLUID COGNITION

2085
01:12:56,038 --> 01:12:57,940
SCORE IS CALCULATED BY

2086
01:12:58,006 --> 01:12:59,708
ASSESSMENT ACROSS EXECUTIVE

2087
01:12:59,775 --> 01:13:01,343
FUNCTIONING, INHIBITORY CONTROL

2088
01:13:01,410 --> 01:13:03,445
AND ATTENTION, EPISODIC MEMORY,

2089
01:13:03,512 --> 01:13:06,615
WORKING MEMORY AND PROCESSING

2090
01:13:06,682 --> 01:13:07,049
SPEED.

2091
01:13:07,116 --> 01:13:09,318
THESE SCORES CAN BE COMPARED TO

2092
01:13:09,384 --> 01:13:10,319
POPULATION NORMED DATA AND CAN

2093
01:13:10,385 --> 01:13:12,721
BE ASSESSED THROUGHOUT THE

2094
01:13:12,788 --> 01:13:14,389
PATIENT'S LIFE SPAN R IT ALSO

2095
01:13:14,456 --> 01:13:16,458
TAKES INTO ACCOUNT THE MOTHER'S

2096
01:13:16,525 --> 01:13:17,860
EDUCATIONAL BACKGROUND WHEN

2097
01:13:17,926 --> 01:13:19,294
ASSESSING CHILDREN AND THE

2098
01:13:19,361 --> 01:13:21,263
SUBJECT'S EDUCATIONAL BACKGROUND

2099
01:13:21,330 --> 01:13:25,634
WHEN ASSESSING ADULTS.

2100
01:13:25,701 --> 01:13:30,139
SO IN A PRELIMINARY STUDY BY

2101
01:13:30,205 --> 01:13:32,341
DR. MIRAGE, SHE ASSESSED 30 BOYS

2102
01:13:32,407 --> 01:13:35,644
WITH DMD USING NIH COGNITION

2103
01:13:35,711 --> 01:13:36,411
BATTERY TOOLBOX.

2104
01:13:36,478 --> 01:13:37,846
SHE FOUND THAT WHEN LOOKING AT

2105
01:13:37,913 --> 01:13:39,348
THE TOTAL COGNITION SCORE, BOYS

2106
01:13:39,414 --> 01:13:42,317
WITH DMD SCORED ONE STANDARD

2107
01:13:42,384 --> 01:13:44,720
DEVIATION BELOW THE AGE

2108
01:13:44,787 --> 01:13:48,657
CORRECTED NORM, COMPARED TO THE

2109
01:13:48,724 --> 01:13:48,991
NORM.

2110
01:13:49,057 --> 01:13:50,859
WHEN LOOKING JUST AT FLUID

2111
01:13:50,926 --> 01:13:53,929
COGNITION, BOYS WITH DMD SCORED

2112
01:13:53,996 --> 01:13:54,797
1.5 STANDARD DEVIATIONS BELOW

2113
01:13:54,863 --> 01:13:56,331
THE NORM WITH SIGNIFICANTLY

2114
01:13:56,398 --> 01:13:58,300
LOWER SCORES IN ATTENTION,

2115
01:13:58,367 --> 01:14:00,269
PROCESSING SPEED AND WORKING

2116
01:14:00,335 --> 01:14:01,603
MEMORY H THERE WAS NO DIFFERENCE

2117
01:14:01,670 --> 01:14:04,339
IN SCORES WHEN LOOKING AT

2118
01:14:04,406 --> 01:14:07,409
CRYSTALLIZED COGNITION.

2119
01:14:07,476 --> 01:14:09,144
SO THESE FINDINGS WERE

2120
01:14:09,211 --> 01:14:10,913
REPLICATED IN A SECOND DATASET

2121
01:14:10,979 --> 01:14:13,749
OF 63 BOYS WITH DMD AGED FOUR

2122
01:14:13,816 --> 01:14:14,383
THROUGH 27.

2123
01:14:14,449 --> 01:14:15,851
THIS TIME WE NOT ONLY LOOKED AT

2124
01:14:15,918 --> 01:14:17,252
THE SCORES ACROSS EACH OF THE

2125
01:14:17,319 --> 01:14:19,354
SEVEN DOMAINS, BUT WE ALSO

2126
01:14:19,421 --> 01:14:22,391
COMPARED SCORES BASED ON DMD

2127
01:14:22,457 --> 01:14:23,325
LOCATION.

2128
01:14:23,392 --> 01:14:30,299
SIMILAR TO DR. HEYMARA GE'S

2129
01:14:30,365 --> 01:14:32,100
STUDY, FOUND SIGNIFICANTLY LOWER

2130
01:14:32,167 --> 01:14:33,368
FOR PROCESSING SPEED, HOWEVER,

2131
01:14:33,435 --> 01:14:35,137
WE FOUND NO DIFFERENCE IN SCORES

2132
01:14:35,204 --> 01:14:36,638
WHEN COMPARING PROXIMAL

2133
01:14:36,705 --> 01:14:42,377
MUTATIONS AND DISTAL MUTATIONS.

2134
01:14:42,444 --> 01:14:43,979
SO ALTHOUGH DISTAL MUTATIONS ARE

2135
01:14:44,046 --> 01:14:49,685
KNOWN TO HAVE A HIGHER BURDEN OF

2136
01:14:49,751 --> 01:14:52,754
DISEASE, THROUGH THE NIH TOOLBOX

2137
01:14:52,821 --> 01:14:53,989
WE SHOW THAT THERE IS NO

2138
01:14:54,056 --> 01:14:56,592
DIFFERENCE IN COGNITION WHEN

2139
01:14:56,658 --> 01:15:00,662
COMPARING PROXIMAL AND DISTAL

2140
01:15:00,729 --> 01:15:04,466
MUTATIONS.

2141
01:15:04,533 --> 01:15:05,701
IT'S ALSO IMPORTANT TO NOTE THAT

2142
01:15:05,767 --> 01:15:09,271
THE NIH COGNITION BATTERY

2143
01:15:09,338 --> 01:15:10,839
TOOLBOX CAN SUCCESSFULLY

2144
01:15:10,906 --> 01:15:13,008
IDENTIFY THE RELATIVE DEFICITS

2145
01:15:13,075 --> 01:15:14,209
AND ATTENTION PROCESSING SPEED

2146
01:15:14,276 --> 01:15:16,812
AND WORKING MEMORY AND THESE

2147
01:15:16,879 --> 01:15:18,347
DOMAINS OF FLUID COGNITION ARE

2148
01:15:18,413 --> 01:15:20,682
KNOWN TO BE AFFECTED BY DMD AS

2149
01:15:20,749 --> 01:15:24,720
DEMONSTRATED IN PREVIOUS STUD

2150
01:15:24,786 --> 01:15:25,520
STUDIES.

2151
01:15:25,587 --> 01:15:28,657
THE TOOLBOX IS A SHORT

2152
01:15:28,724 --> 01:15:29,892
ASSESSMENT THAT CAN BE COMPLETED

2153
01:15:29,958 --> 01:15:33,595
ACROSS THE PAISH'S LIFE SPAN AND

2154
01:15:33,662 --> 01:15:34,997
SCORES CAN BE COMPARED TO

2155
01:15:35,063 --> 01:15:37,633
POPULATION NORMED DATA.

2156
01:15:37,699 --> 01:15:39,968
THUS, WE PROPOSE THAT THE NIH

2157
01:15:40,035 --> 01:15:41,703
TOOLBOX BE USED AS A CLINICAL

2158
01:15:41,770 --> 01:15:46,341
TOOL TO SCREEN AND ASSESS DMD

2159
01:15:46,408 --> 01:15:48,477
PATIENTS FOR INTELLECTUAL AND

2160
01:15:48,543 --> 01:15:49,711
LEARNING DISABILITIES, AS IT WAS

2161
01:15:49,778 --> 01:15:51,780
ABLE TO SUCCESSFULLY IDENTIFY

2162
01:15:51,847 --> 01:15:58,887
THE DOMAINS AFFECTED BY DMD.

2163
01:15:58,954 --> 01:16:01,523
I WOULD LIKE TO TAKE A MOMENT TO

2164
01:16:01,590 --> 01:16:04,626
ACKNOWLEDGE DR. HEYMARAGE AND

2165
01:16:04,693 --> 01:16:06,361
DR. CAT FOR THEIR CONTRIBUTION

2166
01:16:06,428 --> 01:16:07,396
TO THIS PROJECT.

2167
01:16:07,462 --> 01:16:08,230
I COULD NOT HAVE DONE THIS

2168
01:16:08,297 --> 01:16:08,664
WITHOUT THEM.

2169
01:16:08,730 --> 01:16:19,207
THANK YOU ALL FOR LISTENING.

2170
01:16:24,846 --> 01:16:25,447
>> GREAT.

2171
01:16:25,514 --> 01:16:31,653
NEXT UP IS SALLY WANG FROM

2172
01:16:31,720 --> 01:16:32,654
NORTHWESTERN UNIVERSITY TALKING

2173
01:16:32,721 --> 01:16:34,089
ABOUT EVALUATING COGNITIVE

2174
01:16:34,156 --> 01:16:39,828
PERFORMANCE IN CHILDREN WITH

2175
01:16:39,895 --> 01:16:43,832
GALACTO -- WITH GALACTOSEMIA,

2176
01:16:43,899 --> 01:16:45,567
RESULTS FROM NIH TOOLBOX

2177
01:16:45,634 --> 01:16:47,970
COGNITIVE BATTERY.

2178
01:16:48,036 --> 01:16:48,637
CORRECTION.

2179
01:16:48,704 --> 01:16:50,038
STELLA ZOONG I NOTICE THE SOLAR

2180
01:16:50,105 --> 01:16:51,907
EE CLIPSZ IS HAPPENING SOON, SO

2181
01:16:51,974 --> 01:16:53,875
I'LL TALK FASTER AND LEAVE MORE

2182
01:16:53,942 --> 01:16:54,643
TIME FOR DATA.

2183
01:16:54,710 --> 01:16:55,110
>> THANKS.

2184
01:16:55,177 --> 01:16:59,481
>> SO TODAY MY TOPIC IS ON THE

2185
01:16:59,548 --> 01:17:02,851
USE OF NIH TOOLBOX TO EVALUATE

2186
01:17:02,918 --> 01:17:05,387
THE COGNITIVE PERFORMANCE IN

2187
01:17:05,454 --> 01:17:08,690
CHILDREN WITH CLASSIC

2188
01:17:08,757 --> 01:17:09,124
GALACTOSEMIA.

2189
01:17:09,191 --> 01:17:10,625
HERE IS MY DISCLOSURE.

2190
01:17:10,692 --> 01:17:12,861
SO LET'S TALK A LITTLE BIT ABOUT

2191
01:17:12,928 --> 01:17:16,031
CLASSIC GALACTOSEMIA.

2192
01:17:16,098 --> 01:17:17,566
THERE ARE A LOT OF THINGS ON

2193
01:17:17,632 --> 01:17:18,133
THIS SLIDE.

2194
01:17:18,200 --> 01:17:19,735
I WANT YOU TO REMEMBER IT'S A

2195
01:17:19,801 --> 01:17:24,673
RARE CONDITION BUT IT'S VERY

2196
01:17:24,740 --> 01:17:27,142
SERIOUS.

2197
01:17:27,209 --> 01:17:31,880
IT IS A RARE MET BOL -- RARE

2198
01:17:31,947 --> 01:17:35,517
AUTOSOMAL RECESSIVE METABOLIC

2199
01:17:35,584 --> 01:17:38,253
DISEASE EXRRKS IP ABILITY TO

2200
01:17:38,320 --> 01:17:43,325
NORMALIZE MET BOL EYES SUGAR

2201
01:17:43,392 --> 01:17:47,796
GALACTOSE, ARE NOT ABLE TO

2202
01:17:47,863 --> 01:17:51,533
TRANSFORM HAD R IN THESE PEOPLE

2203
01:17:51,600 --> 01:17:55,904
LTS TRANSFORMED INTO

2204
01:17:55,971 --> 01:17:57,005
GALACCTITOL, HIGHLY TOXIC.

2205
01:17:57,072 --> 01:17:59,508
IT BUILDS UP IN BRAIN AND BLOOD

2206
01:17:59,574 --> 01:18:03,378
AND ORGANS AND CAUSES MASSIVE

2207
01:18:03,445 --> 01:18:03,712
COMPLICATIONS.

2208
01:18:03,779 --> 01:18:04,546
RARE CONDITION.

2209
01:18:04,613 --> 01:18:05,847
HAPPENS ONLY IN ABOUT 80

2210
01:18:05,914 --> 01:18:06,848
CHILDREN PER YEAR IN THE UNITED

2211
01:18:06,915 --> 01:18:08,784
STATES AND CURRENTLY ONLY ABOUT

2212
01:18:08,850 --> 01:18:10,585
3,000 ADULTS AND CHILDREN HAVE

2213
01:18:10,652 --> 01:18:16,158
CLASSIC GALCTOSEMIA, MOST OF

2214
01:18:16,224 --> 01:18:17,659
THEM ARE UNDER 40 YEARS OLD.

2215
01:18:17,726 --> 01:18:19,394
IT IS A SERIOUS DISEASE BECAUSE

2216
01:18:19,461 --> 01:18:21,763
BEFORE THE NEWBORN SCREENING HAD

2217
01:18:21,830 --> 01:18:24,733
INCLUDED CLASSIC GALACTOSER MIA

2218
01:18:24,800 --> 01:18:27,035
INTO THE PANEL, A MAJORITY OF

2219
01:18:27,102 --> 01:18:29,204
THE KIDS WILL NOT SURVIVE

2220
01:18:29,271 --> 01:18:34,042
CLASSIC GALACTOS ERB MIA, SO IN

2221
01:18:34,109 --> 01:18:36,144
THE TEN DAYS IF THEY'RE NOT

2222
01:18:36,211 --> 01:18:37,979
RESTRICTED IN LACTOSE RESTRICTED

2223
01:18:38,046 --> 01:18:40,715
DIET THEY WILL DIE BY MASSIVE

2224
01:18:40,782 --> 01:18:40,982
INFECTION.

2225
01:18:41,049 --> 01:18:44,553
THANKS ON THE NEWBORN SCREENING

2226
01:18:44,619 --> 01:18:48,190
AS WELL AS THE GALACTOSE

2227
01:18:48,256 --> 01:18:49,391
RESTRICTSDZ DIE THE IT IS THE

2228
01:18:49,458 --> 01:18:55,397
ONLY OPTION FOR THIS BE -- THE

2229
01:18:55,464 --> 01:18:55,764
DIET.

2230
01:18:55,831 --> 01:18:58,033
MORTALITY SIGNIFICANTLY REDUCED.

2231
01:18:58,100 --> 01:19:02,237
HOWEVER, GALACTOS ERIC DIET DOES

2232
01:19:02,304 --> 01:19:03,738
NOT REALLY PREVENT COMPLICATIONS

2233
01:19:03,805 --> 01:19:07,342
BECAUSE THE BODY ALSO PRODUCES

2234
01:19:07,409 --> 01:19:08,777
GALACTOSE ENDOGENOUSLY SO

2235
01:19:08,844 --> 01:19:11,513
CHILDREN AND ADULTS SURVIVED

2236
01:19:11,580 --> 01:19:15,884
CHILDBIRTH OR INFANT STAGE OF

2237
01:19:15,951 --> 01:19:17,285
GALACTOSEMIA ALSO DEVELOP A LOT

2238
01:19:17,352 --> 01:19:19,054
OF SIGNIFICANT COMPLICATIONS

2239
01:19:19,121 --> 01:19:21,123
SUCH AS CATARACTS, SPEECH AND

2240
01:19:21,189 --> 01:19:26,261
LANGUAGE ISSUES, COGNITIVE

2241
01:19:26,328 --> 01:19:27,929
IMPAIRMENT, MOTOR ISSUES,

2242
01:19:27,996 --> 01:19:29,664
FERTILITY ISSUES, BEHAVIOR AND

2243
01:19:29,731 --> 01:19:31,399
ADAPTIVE SKILLS IS IMPAIRED AS

2244
01:19:31,466 --> 01:19:35,170
WELL AS TREMOR AND SEIZURES.

2245
01:19:35,237 --> 01:19:38,540
SO HERE I'M GOING TO PRESENT A

2246
01:19:38,607 --> 01:19:39,641
CROSS-SECTIONAL ANALYSIS OF A

2247
01:19:39,708 --> 01:19:45,580
LONG TUD NATURAL STUDY THAT

2248
01:19:45,647 --> 01:19:51,253
STUDY CHILDREN WITH GALACTOSEEM

2249
01:19:51,319 --> 01:19:52,487
YA, PHARMACEUTICAL INTERVENTION

2250
01:19:52,554 --> 01:19:55,190
AND PIVOTAL STUDY, AGENT IS

2251
01:19:55,257 --> 01:20:03,298
CALLED ATO87 AND -- CURRENTLY IN

2252
01:20:03,365 --> 01:20:05,600
REVIEW, I HOPE TO PRESENT FUTURE

2253
01:20:05,667 --> 01:20:09,204
DATA R CURRENTLY TALKING ABOUT

2254
01:20:09,271 --> 01:20:10,205
COGNITIVE PROFILE OF THESE

2255
01:20:10,272 --> 01:20:10,472
CHILDREN.

2256
01:20:10,539 --> 01:20:13,175
IN THE STUDY CHILDREN TWO TO

2257
01:20:13,241 --> 01:20:17,779
SEVEN WERE ENROLLED WITH

2258
01:20:17,846 --> 01:20:20,382
CONFIRMED GENETIC OF CLACK TOE

2259
01:20:20,448 --> 01:20:22,918
SEEM YA -- GALACTOSEEM YA.

2260
01:20:22,984 --> 01:20:26,288
AS YOU CAN ARE IMAGINE, IT IS

2261
01:20:26,354 --> 01:20:33,261
VERY IMPORTANT TO UNDERSTAND COG

2262
01:20:33,328 --> 01:20:34,462
IF I HAVE PROFILES OF THE

2263
01:20:34,529 --> 01:20:36,531
CHILDREN AND TREATMENT OF THE

2264
01:20:36,598 --> 01:20:37,732
PHARMACEUTICAL AGENT AND

2265
01:20:37,799 --> 01:20:39,601
PROGRESSION OF THE DISEASE, SO

2266
01:20:39,668 --> 01:20:40,602
TBHEED TO HAVE AN IMPORTANT,

2267
01:20:40,669 --> 01:20:41,670
GOOD MEASUREMENT TOOL, AND WE

2268
01:20:41,736 --> 01:20:44,306
CHOOSE NIH TOOLBOX.

2269
01:20:44,372 --> 01:20:46,641
SO WHY NIH TOOLBOX?

2270
01:20:46,708 --> 01:20:48,343
I THINK I'M PREACHING TO THE

2271
01:20:48,410 --> 01:20:50,879
CHOIR HERE, WE ALL KNOW THAT NIH

2272
01:20:50,946 --> 01:20:52,714
TOOLBOX IS NOT ONLY RELIABLE,

2273
01:20:52,781 --> 01:20:59,487
VALID AND CAN BE USED IN A WIDE

2274
01:20:59,554 --> 01:21:01,256
AGE SPAN FROM THREE TO 85, AND

2275
01:21:01,323 --> 01:21:02,924
ALSO I THINK IN OUR CLINICAL

2276
01:21:02,991 --> 01:21:03,758
STUDIES, BECAUSE WE HAVE

2277
01:21:03,825 --> 01:21:06,061
CHILDREN ALL THE WAY FROM TWO TO

2278
01:21:06,127 --> 01:21:07,862
17, IT'S IMPORTANT TO INCLUDE AS

2279
01:21:07,929 --> 01:21:10,165
MANY CHILDREN AS POSSIBLE TO USE

2280
01:21:10,232 --> 01:21:12,467
THE SAME BATTERY.

2281
01:21:12,534 --> 01:21:13,868
SO WHICH IS IMPORTANT.

2282
01:21:13,935 --> 01:21:17,272
THE OTHER THING I THINK IN NIH

2283
01:21:17,339 --> 01:21:19,040
TOOLBOX IS REALLY A THAIS TOOL

2284
01:21:19,107 --> 01:21:20,242
FOR PHARMACEUTICAL INTERVENTIONS

2285
01:21:20,308 --> 01:21:22,410
AND STUDIES BECAUSE -- REALLY A

2286
01:21:22,477 --> 01:21:23,812
NICE TOOL.

2287
01:21:23,878 --> 01:21:25,046
BECAUSE IT TRACKS ASSESSMENT

2288
01:21:25,113 --> 01:21:27,115
CHANGE OF THE SCORE, AS WELL AS

2289
01:21:27,182 --> 01:21:29,351
THE SCORING AND ADMINISTRATION

2290
01:21:29,417 --> 01:21:31,586
DOES NOT HAVE TO BE DONE WITH

2291
01:21:31,653 --> 01:21:33,688
EXPERTS.  SO WE TRAINED CLINICAL

2292
01:21:33,755 --> 01:21:36,324
SITES TO ADMINISTER THE TEST AND

2293
01:21:36,391 --> 01:21:37,892
THE SCORE CAN BE INSTANTLY

2294
01:21:37,959 --> 01:21:38,727
AVAILABLE AS SOON AS THE

2295
01:21:38,793 --> 01:21:41,463
CHILDREN COMPLETE THE TEST.

2296
01:21:41,529 --> 01:21:43,965
SO IN THIS STUDY WE USE THE

2297
01:21:44,032 --> 01:21:45,900
AGE-APPROPRIATE TASK TO TEST THE

2298
01:21:45,967 --> 01:21:49,337
WIDE RANGE, ALL SEVEN COGNITIVE

2299
01:21:49,404 --> 01:21:51,740
TESTS, WITH SEVEN DOMAINS.

2300
01:21:51,806 --> 01:21:55,277
AND WE ARE USING THE AGE

2301
01:21:55,343 --> 01:21:56,444
STANDARD SCORE PRESENTED HERE.

2302
01:21:56,511 --> 01:21:58,213
BY THE WAY, ALL THE TESTS WERE

2303
01:21:58,280 --> 01:21:59,514
DONE IN ENGLISH.

2304
01:21:59,581 --> 01:22:02,017
SO THIS IS A SIMPLE DEMOGRAPHIC

2305
01:22:02,083 --> 01:22:02,350
TABLE.

2306
01:22:02,417 --> 01:22:04,886
I JUST WANT TO POINT OUT A

2307
01:22:04,953 --> 01:22:05,854
COUPLE IMPORTANT THINGS.

2308
01:22:05,920 --> 01:22:08,957
THE MEAN AGE IS 9.1 AND IS EQUAL

2309
01:22:09,024 --> 01:22:11,159
PERCENTAGE OF MALE AND FEMALE,

2310
01:22:11,226 --> 01:22:15,196
AND THESE CHILDREN COME IN WITH

2311
01:22:15,263 --> 01:22:17,599
ALSO SOME CNS DISEASE

2312
01:22:17,666 --> 01:22:17,899
BACKGROUND.

2313
01:22:17,966 --> 01:22:19,367
A MAJORITY OF KIDS ACTUALLY MORE

2314
01:22:19,434 --> 01:22:21,002
THAN 50% OF CHILDREN ALREADY

2315
01:22:21,069 --> 01:22:23,972
HAVE SPEECH AND LANGUAGE

2316
01:22:24,039 --> 01:22:24,739
IMPAIRMENT, LEARNING DISORDER

2317
01:22:24,806 --> 01:22:28,243
AND SOME OF THEM HAVE BEHAVIOR

2318
01:22:28,310 --> 01:22:30,645
PSYCHIATRIC DISORDER DIAGNOSED,

2319
01:22:30,712 --> 01:22:32,614
AD-D ADHD, ANXIETY, DEPRESSION,

2320
01:22:32,681 --> 01:22:35,050
AND MANUFACTURE THEM HAVE ALSO

2321
01:22:35,116 --> 01:22:36,885
MOTOR IMPAIRMENT SUCH AS TREMOR

2322
01:22:36,951 --> 01:22:43,258
AND ATAXIA.

2323
01:22:43,325 --> 01:22:45,193
SO HERE WE PRESENT FIRST THE

2324
01:22:45,260 --> 01:22:46,294
COGNITIVE IMPAIRMENT SCORE,

2325
01:22:46,361 --> 01:22:47,829
COGNITIVE PROFILE, THESE ARE

2326
01:22:47,896 --> 01:22:49,831
FOUR COMPOSITE SCORE THAT

2327
01:22:49,898 --> 01:22:51,466
GENERATED IF NIH TOOLBOX.

2328
01:22:51,533 --> 01:22:55,937
SO AS YOU CAN SEE, THE TOTAL

2329
01:22:56,004 --> 01:22:58,907
COMPOSITE SCORE IS RELATIVELY

2330
01:22:58,973 --> 01:23:00,175
LOW, CLOSE IT TWO STANDARD

2331
01:23:00,241 --> 01:23:01,109
DEVIATIONS BELOW THE MEAN.

2332
01:23:01,176 --> 01:23:02,977
HERE THE SOLID LINE IS THE

2333
01:23:03,044 --> 01:23:04,279
POPULATION MEAN AND THE TWO

2334
01:23:04,346 --> 01:23:06,915
DOTTED LINE IS ONE STANDARD AND

2335
01:23:06,981 --> 01:23:09,684
TWO STANDARD DEVIATIONS BELOW

2336
01:23:09,751 --> 01:23:12,954
THE MEAN.

2337
01:23:13,021 --> 01:23:15,590
CRYSTALIZED COMPOSITE SCORE

2338
01:23:15,657 --> 01:23:16,858
COMPARED TO FLUID IS RELATIVELY

2339
01:23:16,925 --> 01:23:17,992
CLOSE TO HER THE MEAN SCORE AND

2340
01:23:18,059 --> 01:23:20,395
ALSO HAVE A LITTLE BIT LESS

2341
01:23:20,462 --> 01:23:25,667
VARIABILITY WITHIN POPULATION.

2342
01:23:25,734 --> 01:23:26,868
LOOKING INTO SPECIFIC TESTS

2343
01:23:26,935 --> 01:23:29,137
ACROSS OUR DOMAIN HERE, I THINK

2344
01:23:29,204 --> 01:23:35,276
WE JUST LOOK AT PREVIOUS STUDY

2345
01:23:35,343 --> 01:23:37,479
PRESENTED, NICE THING ABOUT NIH

2346
01:23:37,545 --> 01:23:38,880
TOOLBOX IS WE CAN COMPARE SCORE

2347
01:23:38,947 --> 01:23:39,914
EVEN WITHIN DIFFERENT DISEASE.

2348
01:23:39,981 --> 01:23:42,817
YOU CAN SEE THESE CHILDREN WITH

2349
01:23:42,884 --> 01:23:44,886
CLASSIC GALACTOSEMIA ACTUALLY

2350
01:23:44,953 --> 01:23:47,922
HAVE ALSO MORE IMPAIRED IN THEIR

2351
01:23:47,989 --> 01:23:50,458
FLUID SKILLS AND THEIR CHRIS

2352
01:23:50,525 --> 01:23:52,394
SCALLIZED SCALES ARE RELATIVELY

2353
01:23:52,460 --> 01:23:55,363
CLOSER TO THE NORMAL SCORE BUT

2354
01:23:55,430 --> 01:23:57,866
MILDLY DEFICIT, BUT IN TERMS OF

2355
01:23:57,932 --> 01:23:59,734
THEIR FLUID SKILLS FOR EXAMPLE

2356
01:23:59,801 --> 01:24:03,037
THE PROCESSING SPEED AND

2357
01:24:03,104 --> 01:24:04,406
FLANKERS ARE THE LOWEST AND WITH

2358
01:24:04,472 --> 01:24:07,509
ALSO A LOT OF VARIABILITIES

2359
01:24:07,575 --> 01:24:10,745
WITHIN THIS POPULATION.

2360
01:24:10,812 --> 01:24:11,980
ONE MORE THING WE'RE GOING TO

2361
01:24:12,046 --> 01:24:15,250
LOOK AT IS BASED ON ACROSS

2362
01:24:15,316 --> 01:24:17,352
DIFFERENT AGE GROUP, WE DID

2363
01:24:17,419 --> 01:24:20,321
ANALYSIS LOOKING AT PROPORTION

2364
01:24:20,388 --> 01:24:22,157
OF CHILDREN IN THEIR STANDARD

2365
01:24:22,223 --> 01:24:23,691
SCORE FALL INTO DIFFERENT

2366
01:24:23,758 --> 01:24:25,193
SEVERITY CATEGORIES.

2367
01:24:25,260 --> 01:24:27,962
ON THE RIGHT, ON YOUR LEFT YOU

2368
01:24:28,029 --> 01:24:31,166
CAN SEE THE RED BAR ARE THE

2369
01:24:31,232 --> 01:24:33,234
CHILDREN THAT HAD STANDARD SCORE

2370
01:24:33,301 --> 01:24:36,404
LESS THAN 70, AND THE YELLOW BAR

2371
01:24:36,471 --> 01:24:40,241
IS BETWEEN SCORES BETWEEN 85,

2372
01:24:40,308 --> 01:24:43,511
115, AND PURPLE BAR IS AVERAGE

2373
01:24:43,578 --> 01:24:43,711
SCORE.

2374
01:24:43,778 --> 01:24:47,882
YOU CAN SEE CHILDREN WITH 13 TO

2375
01:24:47,949 --> 01:24:49,617
16 TEENAGERS ACTUALLY HAVE MORE

2376
01:24:49,684 --> 01:24:52,487
SEVERE SIGNIFICANT DEFICIT OVER

2377
01:24:52,554 --> 01:24:54,923
60% OF THEM HAVE STANDARD SCORE

2378
01:24:54,989 --> 01:24:57,892
LESS THAN 60 -- LESS THAN 70,

2379
01:24:57,959 --> 01:24:58,393
SORRY.

2380
01:24:58,460 --> 01:25:01,062
SO THIS INDICATES THIS

2381
01:25:01,129 --> 01:25:03,264
PROGRESSION OF THE DISEASE.

2382
01:25:03,331 --> 01:25:04,933
HOWEVER, THESE ARE THE STANDARD

2383
01:25:04,999 --> 01:25:07,202
SCORES, SO IT DOES NOT REALLY --

2384
01:25:07,268 --> 01:25:09,170
AND IT'S A CROSS-SECTIONAL, SO

2385
01:25:09,237 --> 01:25:11,706
WE DON'T HAVE DATA CURRENTLY

2386
01:25:11,773 --> 01:25:14,008
PRESENTED IN TERMS OF A LONG TUD

2387
01:25:14,075 --> 01:25:16,244
NATURAL RESULTS.

2388
01:25:16,311 --> 01:25:17,111
-- LONGITUDINAL RESULTS.

2389
01:25:17,178 --> 01:25:18,513
SO IN THE FUTURE IF WE USE

2390
01:25:18,580 --> 01:25:20,482
VERSION THREE, WE CAN USE

2391
01:25:20,548 --> 01:25:22,684
AGE-SENSITIVE SCORE TO TRACK

2392
01:25:22,750 --> 01:25:24,752
INDIVIDUAL CHANGES.

2393
01:25:24,819 --> 01:25:26,521
SO LAST BUT NOT LEAST, I WANT TO

2394
01:25:26,588 --> 01:25:28,923
HAVE A COUPLE CONCLUSION AND

2395
01:25:28,990 --> 01:25:29,657
DISCUSSION POINTS.

2396
01:25:29,724 --> 01:25:33,628
SO THE OVERALL, THE

2397
01:25:33,695 --> 01:25:34,762
AGE-CORRECTED STANDARD COMPOSITE

2398
01:25:34,829 --> 01:25:36,698
SCORE USING NIH TOOLBOX WE CAN

2399
01:25:36,764 --> 01:25:40,101
SEE FOR THESE POPULATIONS IS

2400
01:25:40,168 --> 01:25:43,271
75.3, AND THERE IS A SIGNIFICANT

2401
01:25:43,338 --> 01:25:45,473
COGNITIVE DEFICIT DEFYING AGE

2402
01:25:45,540 --> 01:25:47,342
STANDARD SCORE BELOW 70 AND THE

2403
01:25:47,408 --> 01:25:50,445
MAJORITY OF THESE AS LESS ENTS

2404
01:25:50,512 --> 01:25:53,181
HAD A SIGNIFICANT DEFICIT.

2405
01:25:53,248 --> 01:25:55,250
ADOLESCENTS ALSO DEMONSTRATE

2406
01:25:55,316 --> 01:25:57,318
MORE IMPAIRMENT IN EXECUTIVE

2407
01:25:57,385 --> 01:26:00,922
FUNCTION AS MEASURED BY FLANKER

2408
01:26:00,989 --> 01:26:02,991
AND DID HE MENTION SHALL CARD

2409
01:26:03,057 --> 01:26:04,425
SORT TEST WITH A MEAN SCORE

2410
01:26:04,492 --> 01:26:05,426
AROUND TWO STANDARD DEVIATIONS

2411
01:26:05,493 --> 01:26:07,161
BELOW THE MEAN, AND THE YOUNGER

2412
01:26:07,228 --> 01:26:08,396
CHILDREN EXHIBITED LOWER SCORES

2413
01:26:08,463 --> 01:26:11,666
IN WORKING MEMORY BUT SIMILAR

2414
01:26:11,733 --> 01:26:12,734
SCORE IN EPISODIC MEMORY

2415
01:26:12,800 --> 01:26:15,403
COMPARED TO OLDER CHILDREN.

2416
01:26:15,470 --> 01:26:18,006
AND FOR RECEPTIVE AND EXPRESSIVE

2417
01:26:18,072 --> 01:26:19,974
LANGUAGE FOR THE TWO

2418
01:26:20,041 --> 01:26:21,843
CRYSTALLIZED TESTS, YOUNGER

2419
01:26:21,910 --> 01:26:23,044
CHILDREN ALSO PERFORMED BETTER

2420
01:26:23,111 --> 01:26:24,779
THAN THEIR OLDER COUNTERPART.

2421
01:26:24,846 --> 01:26:28,082
SO OVERALL, THE OLDER CHILDREN

2422
01:26:28,149 --> 01:26:30,251
EXPERIENCED MORE SEVERE

2423
01:26:30,318 --> 01:26:31,052
COGNITIVE IMPAIRMENT COMPARED TO

2424
01:26:31,119 --> 01:26:33,755
THE YOUNGER CHILDREN,

2425
01:26:33,821 --> 01:26:35,490
UNDERSCORING THE PROGRESSIVE

2426
01:26:35,557 --> 01:26:39,127
NATURE OF THE DISEASE, AND THESE

2427
01:26:39,193 --> 01:26:40,094
FIENDLE DEFINITELY SUPPORT THE

2428
01:26:40,161 --> 01:26:41,529
IMPORTANCE OF TARGETING

2429
01:26:41,596 --> 01:26:43,064
COGNITIVE DEVELOPMENT IN EARLY

2430
01:26:43,131 --> 01:26:45,133
YEARS AND THE NEED FOR

2431
01:26:45,199 --> 01:26:46,568
PHARMACEUTICAL INTERVENTION TO

2432
01:26:46,634 --> 01:26:50,405
PREVENT FURTHER DECLINE AMONG

2433
01:26:50,471 --> 01:27:00,848
CHILDREN WITH CLASSIC

2434
01:27:02,684 --> 01:27:02,884
GALACTOSEMIA.

2435
01:27:02,951 --> 01:27:03,151
THANK YOU.

2436
01:27:03,217 --> 01:27:05,520
>> OUR LAST SPEAKER WILL BE

2437
01:27:05,587 --> 01:27:07,388
DR. DAVID HESSL TALKING ABOUT

2438
01:27:07,455 --> 01:27:09,591
THE NIH TOOLBOX COGNITION

2439
01:27:09,657 --> 01:27:10,959
BATTERY AND ITS UTILITY IN

2440
01:27:11,025 --> 01:27:14,696
CLINICAL TRIALS FOR

2441
01:27:14,762 --> 01:27:19,567
NEURODEVELOPMENTAL DISORDERS.

2442
01:27:19,634 --> 01:27:22,370
>> HI, EVERYONE.

2443
01:27:22,437 --> 01:27:22,570
OKAY.

2444
01:27:22,637 --> 01:27:25,340
SEE IF I CAN LEARN HOW TO WORK

2445
01:27:25,406 --> 01:27:25,873
THIS.

2446
01:27:25,940 --> 01:27:28,042
OKAY.

2447
01:27:28,109 --> 01:27:28,276
GREAT.

2448
01:27:28,343 --> 01:27:31,679
SO I'M DAVID HESSL, FROM UC

2449
01:27:31,746 --> 01:27:31,879
DAVIS.

2450
01:27:31,946 --> 01:27:35,049
I'VE BEEN THE PI OF A LONG TUD

2451
01:27:35,116 --> 01:27:36,517
NATURAL PROJECT THAT HAS BEEN

2452
01:27:36,584 --> 01:27:39,053
FOCUSED ON THE NIH TOOLBOX

2453
01:27:39,120 --> 01:27:41,356
COGNITION BATTERY IN PEOPLE WITH

2454
01:27:41,422 --> 01:27:42,523
INTELLECTUAL DISABILITIES FOR

2455
01:27:42,590 --> 01:27:44,826
THE PAST ALMOST TEN YEARS NOW.

2456
01:27:44,892 --> 01:27:46,628
WE'VE HAD TWO CYCLES OF FUNDING

2457
01:27:46,694 --> 01:27:49,998
FROM NICHD, AND THIS LAST ONE

2458
01:27:50,064 --> 01:27:51,199
ACTUALLY IS PARTIALLY SUPPORTED

2459
01:27:51,265 --> 01:27:54,035
BY THE INCLUDE DOWN SYNDROME

2460
01:27:54,102 --> 01:27:55,069
INITIATIVE, REALLY GRATEFUL FOR

2461
01:27:55,136 --> 01:27:56,371
THAT SUPPORT.

2462
01:27:56,437 --> 01:27:58,006
IT'S BEEN A REALLY EXCITING PART

2463
01:27:58,072 --> 01:27:59,107
OF MY CAREER.

2464
01:27:59,173 --> 01:28:00,642
I HAD THIS QUOTE, THIS IS WHERE

2465
01:28:00,708 --> 01:28:02,510
THE RUBBER MEETS THE ROAD, AND I

2466
01:28:02,577 --> 01:28:04,479
SAY THAT BECAUSE I LEARNED OVER

2467
01:28:04,545 --> 01:28:06,481
THE YEARS THAT WHEN IT COMES TO

2468
01:28:06,547 --> 01:28:09,817
INTERVENTIONS AND CLINICAL

2469
01:28:09,884 --> 01:28:12,020
TRIALS, THE SELECTION AND

2470
01:28:12,086 --> 01:28:12,920
SENSITIVITY OF THE OUTCOME

2471
01:28:12,987 --> 01:28:15,423
MEASURE THAT WE USE FOR THESE

2472
01:28:15,490 --> 01:28:18,259
TRIALS IS REALLY WHERE THE

2473
01:28:18,326 --> 01:28:19,360
RUBBER MEETS THE ROAD.

2474
01:28:19,427 --> 01:28:21,229
IT'S WHERE WE DECIDE AND WE

2475
01:28:21,295 --> 01:28:22,196
DETERMINE WHETHER AN

2476
01:28:22,263 --> 01:28:23,331
INTERVENTION IS EFFECTIVE.

2477
01:28:23,398 --> 01:28:24,966
SO IT'S A REALLY, REALLY

2478
01:28:25,033 --> 01:28:29,237
IMPORTANT THING TO FOCUS ON

2479
01:28:29,303 --> 01:28:30,672
OUTCOME MEASURES.

2480
01:28:30,738 --> 01:28:32,740
THESE ARE SOME OF MY

2481
01:28:32,807 --> 01:28:33,041
DISCLOSURES.

2482
01:28:33,107 --> 01:28:34,842
I'VE BEEN INVOLVED IN FRAGILE-X

2483
01:28:34,909 --> 01:28:37,111
SYNDROME RESEARCH FOR ALMOST MY

2484
01:28:37,178 --> 01:28:38,746
ENTIRE CAREER, AND NOW HAVE BEEN

2485
01:28:38,813 --> 01:28:40,748
INVOLVED IN SOME DOWN SYNDROME

2486
01:28:40,815 --> 01:28:41,716
STUDIES AS WELL.

2487
01:28:41,783 --> 01:28:44,185
SO I DO HAVE SOME DISCLOSURES

2488
01:28:44,252 --> 01:28:46,854
HERE TO SAY THAT I'VE BEEN

2489
01:28:46,921 --> 01:28:48,289
SUPPORTING DIFFERENT

2490
01:28:48,356 --> 01:28:49,057
TRANSLATIONAL RESEARCH EFFORTS

2491
01:28:49,123 --> 01:28:52,460
IN BOTH FRAGILE-X AND DOWN'S

2492
01:28:52,527 --> 01:28:52,727
SYNDROME.

2493
01:28:52,794 --> 01:28:56,497
SO I LIKE THIS IMAGE BECAUSE IT

2494
01:28:56,564 --> 01:28:58,032
DEPICTS JUST HOW MUCH EFFORT AND

2495
01:28:58,099 --> 01:28:59,901
TRAINING IT TAKES TO ACHIEVE A

2496
01:28:59,967 --> 01:29:00,601
GOAL.

2497
01:29:00,668 --> 01:29:04,305
SO I LOVE TALKING -- I LOVE

2498
01:29:04,372 --> 01:29:05,440
TRACK AND FIELD AND ONE OF THE

2499
01:29:05,506 --> 01:29:07,842
EVENTS I ALWAYS FELT LIKE I

2500
01:29:07,909 --> 01:29:09,377
WISHED I COULD HAVE DONE WAS THE

2501
01:29:09,444 --> 01:29:10,044
POLE VALUATE.

2502
01:29:10,111 --> 01:29:16,084
WHEN YOU THINK ABOUT POLE POLE ,

2503
01:29:16,150 --> 01:29:17,485
YOU HAVE TO BE FAST,

2504
01:29:17,552 --> 01:29:18,352
COORDINATED, STRONG, YOU HAVE TO

2505
01:29:18,419 --> 01:29:20,088
HAVE SOME TECHNICAL EXPERTISE,

2506
01:29:20,154 --> 01:29:22,056
AND WHAT I WANT TO TRY TO CONVEY

2507
01:29:22,123 --> 01:29:26,894
IS THAT THIS EFFORT TO VALIDATE

2508
01:29:26,961 --> 01:29:28,229
MEASURES NOT ONLY FOR USE IN A

2509
01:29:28,296 --> 01:29:30,031
POPULATION BUT FOR USE IN

2510
01:29:30,098 --> 01:29:32,033
CLINICAL TRIALS, IT'S A VERY

2511
01:29:32,100 --> 01:29:33,468
HIGH BAR AND THERE'S A LOT OF

2512
01:29:33,534 --> 01:29:35,803
DIFFERENT COMPONENTS TO BEING

2513
01:29:35,870 --> 01:29:36,237
SUCCESSFUL.

2514
01:29:36,304 --> 01:29:38,206
SO WHAT RAISES THE BAR?

2515
01:29:38,272 --> 01:29:40,942
OF COURSE, THE TEST HAS TO BE

2516
01:29:41,008 --> 01:29:42,577
DOABLE FOR THE POPULATION YOU'RE

2517
01:29:42,643 --> 01:29:43,211
INTERESTED IN.

2518
01:29:43,277 --> 01:29:45,413
IT HAS TO HAVE AN ADEQUATE RANGE

2519
01:29:45,480 --> 01:29:47,715
TO CAPTURE THE VARIABILITY IN

2520
01:29:47,782 --> 01:29:48,983
THE POPULATION.

2521
01:29:49,050 --> 01:29:51,652
IT HAS TO BE RELIABLE OVER TIME.

2522
01:29:51,719 --> 01:29:54,288
SO WE TALKED ABOUT TEST

2523
01:29:54,355 --> 01:29:56,157
RELIABILITY OR STABILITY OF A

2524
01:29:56,224 --> 01:29:58,426
MEASURE WHEN THERE'S NO, QUOTE,

2525
01:29:58,493 --> 01:29:59,660
REAL CHANGE HAPPENING.

2526
01:29:59,727 --> 01:30:01,162
SO THAT'S ESPECIALLY IMPORTANT

2527
01:30:01,229 --> 01:30:03,264
TO LOOK AT THE INTERVAL OF TIME

2528
01:30:03,331 --> 01:30:05,900
THAT YOU'LL BE STUDYING IN A

2529
01:30:05,967 --> 01:30:06,901
CLINICAL TRIAL.

2530
01:30:06,968 --> 01:30:09,070
SOME TEST THAT IS WE USE,

2531
01:30:09,137 --> 01:30:11,806
ESPECIALLY IN THE COGNITIVE

2532
01:30:11,873 --> 01:30:13,875
DEMAIN -- DOMAIN CAN HAVE

2533
01:30:13,941 --> 01:30:14,709
COGNITIVE EFFECTS.

2534
01:30:14,776 --> 01:30:16,410
SO YOU WOULD LIKE THEM TO HAVE

2535
01:30:16,477 --> 01:30:17,345
LESS SUSCEPTIBILITY TO THAT.

2536
01:30:17,411 --> 01:30:18,813
YOU WANT THEM TO BE SENSITIVE TO

2537
01:30:18,880 --> 01:30:19,046
CHANGE.

2538
01:30:19,113 --> 01:30:20,348
SO WHEN THERE'S A TREATMENT AND

2539
01:30:20,414 --> 01:30:21,482
SOMEBODY ACTUALLY GETS BETTER,

2540
01:30:21,549 --> 01:30:22,884
YOU WANT THE MEASURE TO BE ABLE

2541
01:30:22,950 --> 01:30:27,688
TO DETECT THAT CHANGE.

2542
01:30:27,755 --> 01:30:30,424
IDEALLY, THE MEASURE WILL HAVE

2543
01:30:30,491 --> 01:30:32,093
ESTABLISHED LINKS TO THE KNOWN

2544
01:30:32,160 --> 01:30:33,394
COGNITIVE PHENOTYPE OF THE

2545
01:30:33,461 --> 01:30:35,696
DISORDER IF YOU'RE FOCUSING ON A

2546
01:30:35,763 --> 01:30:36,330
COGNITIVE MEASURE.

2547
01:30:36,397 --> 01:30:37,965
SO YOU WANT IT TO KIND OF ALIGN

2548
01:30:38,032 --> 01:30:40,601
WITH WHAT YOU WOULD EXPECT TO

2549
01:30:40,668 --> 01:30:40,835
SEE.

2550
01:30:40,902 --> 01:30:43,905
A BONUS IS IF THE MEASURES HAVE

2551
01:30:43,971 --> 01:30:46,107
KNOWN UNDERLYING BRAIN

2552
01:30:46,174 --> 01:30:47,275
MECHANISMS THAT ARE UNDERSTOOD

2553
01:30:47,341 --> 01:30:49,177
IN PEOPLE WHO ARE TYPICALLY

2554
01:30:49,243 --> 01:30:51,479
DEVELOPING AND ARE DEFICIENT OR

2555
01:30:51,546 --> 01:30:54,549
ABERRANT IN PEOPLE WHO HAVE THE

2556
01:30:54,615 --> 01:30:54,816
CONDITION.

2557
01:30:54,882 --> 01:30:56,484
AND THEN THIS LAST ONE, WHICH

2558
01:30:56,551 --> 01:31:00,021
WE'VE BEEN WORKING A LOT LATELY,

2559
01:31:00,087 --> 01:31:02,757
IS THE CONCEPT OF CLINICAL

2560
01:31:02,824 --> 01:31:03,624
MEANINGFULNESS OR IMPORTANCE.

2561
01:31:03,691 --> 01:31:04,725
SO WHEN WE HAVE A MEASURE THAT

2562
01:31:04,792 --> 01:31:06,160
WE DO IN THE LAB, WE WANT TO BE

2563
01:31:06,227 --> 01:31:08,029
ABLE TO DEMONSTRATE THAT IT

2564
01:31:08,095 --> 01:31:09,263
ACTUALLY HAS MEANING FOR THE

2565
01:31:09,330 --> 01:31:11,399
PEOPLE IN THEIR DAILY LIVES AND

2566
01:31:11,465 --> 01:31:13,367
THAT WHEN THE MEASURE GETS

2567
01:31:13,434 --> 01:31:14,702
BETTER, WHEN YOU TEST THEM, THAT

2568
01:31:14,769 --> 01:31:16,771
IT REFLECTS SOMETHING THAT'S

2569
01:31:16,838 --> 01:31:19,807
ACTUALLY HAPPENED IN THEIR LIFE.

2570
01:31:19,874 --> 01:31:21,342
SO, MANY YERS AGO, THIS IS THE

2571
01:31:21,409 --> 01:31:23,711
KIND OF AHA MOMENT THAT I HAD

2572
01:31:23,778 --> 01:31:25,746
WHEN I STARTED READING ABOUT THE

2573
01:31:25,813 --> 01:31:27,048
TOOLBOX AND REALIZED THAT THERE

2574
01:31:27,114 --> 01:31:28,916
WAS THIS VERY BROAD

2575
01:31:28,983 --> 01:31:30,117
DEVELOPMENTAL RANGE THAT WAS

2576
01:31:30,184 --> 01:31:31,953
BEING ADDRESSED FROM AGE THREE

2577
01:31:32,019 --> 01:31:36,691
TO AGE 89, AND I KNEW THAT MANY

2578
01:31:36,757 --> 01:31:38,860
OF OUR INDIVIDUALS THAT WE STUDY

2579
01:31:38,926 --> 01:31:40,862
WITH INTELLECTUAL DISABILITIES

2580
01:31:40,928 --> 01:31:43,364
ARE OLDER BUT HAVE MENTAL AGES

2581
01:31:43,431 --> 01:31:45,766
THAT ARE LOWER.

2582
01:31:45,833 --> 01:31:47,735
SO KNOWING THAT IT COULD CAPTURE

2583
01:31:47,802 --> 01:31:50,037
THIS BROAD RANGE WAS AN

2584
01:31:50,104 --> 01:31:50,371
ADVANTAGE.

2585
01:31:50,438 --> 01:31:53,875
I ALSO STARTED READING ABOUT THE

2586
01:31:53,941 --> 01:31:55,643
TOOLBOX IN THE MONOGRAPHS PAPERS

2587
01:31:55,710 --> 01:31:57,278
THAT CAME OUT MANY YEARS BACK

2588
01:31:57,345 --> 01:31:59,146
AND SAW SOME OF THESE GRAPHS

2589
01:31:59,213 --> 01:32:03,217
THAT SHOWED THESE VERY NICE

2590
01:32:03,284 --> 01:32:04,852
TIGHTER OR BARS AROUND DIFFERENT

2591
01:32:04,919 --> 01:32:06,153
AGES CROSS DEVELOPMENT, AND I

2592
01:32:06,220 --> 01:32:07,889
SAID AHA, THAT COULD REALLY BE

2593
01:32:07,955 --> 01:32:08,990
SOMETHING THAT COULD BE

2594
01:32:09,056 --> 01:32:09,991
SENSITIVE NOT ONLY TO

2595
01:32:10,057 --> 01:32:11,325
DEVELOPMENTAL CHANGES IN PEOPLE

2596
01:32:11,392 --> 01:32:13,728
WHO HAVE DISABILITIES BUT ALSO

2597
01:32:13,794 --> 01:32:15,463
WITHIN TREATMENT STUDIES, COULD

2598
01:32:15,529 --> 01:32:17,632
THEY ALSO BE EQUALLY SENSITIVE.

2599
01:32:17,698 --> 01:32:19,200
I'M GOING TO JUST SKIP BY THIS

2600
01:32:19,267 --> 01:32:20,735
BECAUSE YOU'VE HEARD A LOT ABOUT

2601
01:32:20,801 --> 01:32:22,503
THE TOOLBOX BATTERY, BUT THIS IS

2602
01:32:22,570 --> 01:32:23,905
JUST A DEPICTION THAT WE USE

2603
01:32:23,971 --> 01:32:26,207
WHEN WE DO THE TESTING WITH OUR

2604
01:32:26,274 --> 01:32:27,308
PARTICIPANTS SO THAT THEY CAN

2605
01:32:27,375 --> 01:32:32,113
SEE WHAT TO EXPECT IN THEIR

2606
01:32:32,179 --> 01:32:34,081
ASSESSMENT.

2607
01:32:34,148 --> 01:32:35,182
ONE OF THE THINGS WE DISCOVERED

2608
01:32:35,249 --> 01:32:37,818
IN USING THE TOOLBOX OR MANY OF

2609
01:32:37,885 --> 01:32:39,120
THE THINGS THAT WE DISCOVERED

2610
01:32:39,186 --> 01:32:41,656
WERE SORT OF GAPS IN THE

2611
01:32:41,722 --> 01:32:44,058
CAPACITY OF THE TOOLBOX TO DO A

2612
01:32:44,125 --> 01:32:46,661
REALLY GROOD JOB -- GOOD JOB OF

2613
01:32:46,727 --> 01:32:48,095
MEASURING COGNITION IN CERTAIN

2614
01:32:48,162 --> 01:32:49,397
SUBJECTS, AND WE FOUND THAT IN

2615
01:32:49,463 --> 01:32:51,699
SOME PEOPLE WITH INTELLECTUAL

2616
01:32:51,766 --> 01:32:52,667
DISABILITY ACTUALLY A

2617
01:32:52,733 --> 01:32:54,435
SUBSTANTIAL NOBODY A TEST SUCH

2618
01:32:54,502 --> 01:32:57,371
AS PATTERN COMPARISON, WE WERE

2619
01:32:57,438 --> 01:32:59,907
GETTING SOME INVALID PATTERN

2620
01:32:59,974 --> 01:33:01,442
RESPONDING, WHERE IT SEEMED LIKE

2621
01:33:01,509 --> 01:33:02,977
THE INDIVIDUALS WERE DOING THE

2622
01:33:03,044 --> 01:33:04,512
TEST PROPERLY BUT WHEN WE

2623
01:33:04,578 --> 01:33:05,913
ACTUALLY PAID CLOSE ATTENTION,

2624
01:33:05,980 --> 01:33:07,682
THEY WERE ACTUALLY JUST KIND OF

2625
01:33:07,748 --> 01:33:08,983
RANDOMLY CHOOSING THE LEFT OR

2626
01:33:09,050 --> 01:33:11,185
RIGHT BUTTON, AND WE REALIZED

2627
01:33:11,252 --> 01:33:13,287
THAT WE NEEDED TO COME UP WITH

2628
01:33:13,354 --> 01:33:14,922
SOMETHING DIFFERENT.

2629
01:33:14,989 --> 01:33:17,358
SO AARON, WHO IS HERE IN THE

2630
01:33:17,425 --> 01:33:18,960
AUDIENCE, SORRY FOR THE OLD

2631
01:33:19,026 --> 01:33:20,094
PICTURE, AARON, YOU'VE GOT TO

2632
01:33:20,161 --> 01:33:23,898
GIVE ME A NEW PICTURE, I GUESS,

2633
01:33:23,965 --> 01:33:25,866
WE WORKED EXTENSIVELY WITH AARON

2634
01:33:25,933 --> 01:33:27,702
TO DEVELOP A NEW TEST THAT WAS

2635
01:33:27,768 --> 01:33:29,303
GOING TO BE LESS SUSCEPTIBLE TO

2636
01:33:29,370 --> 01:33:30,004
THIS PROBLEM.

2637
01:33:30,071 --> 01:33:33,107
SO IN THIS PARTICULAR PROCESSING

2638
01:33:33,174 --> 01:33:34,976
SPEED TEST, THE INDIVIDUAL JUST

2639
01:33:35,042 --> 01:33:36,978
NEEDS TO MATCH THE IMAGE THEY

2640
01:33:37,044 --> 01:33:38,312
SEE IN THE TOP WITH ONE OF THE

2641
01:33:38,379 --> 01:33:38,946
FOUR AT THE BOTTOM.

2642
01:33:39,013 --> 01:33:40,581
SO INSTEAD OF HAVING TWO

2643
01:33:40,648 --> 01:33:41,682
CHOICES, NOW THERE'S FOUR

2644
01:33:41,749 --> 01:33:43,551
CHOICES, SO LESS CHANCE

2645
01:33:43,617 --> 01:33:45,720
RESPONDING AND LESS

2646
01:33:45,786 --> 01:33:47,154
SUSCEPTIBILITY TO PATTERN

2647
01:33:47,221 --> 01:33:47,455
RESPONDING.

2648
01:33:47,521 --> 01:33:48,923
SO THAT WAS JUST ONE OF THE

2649
01:33:48,990 --> 01:33:50,992
ADVANCES THAT WE HAD DURING

2650
01:33:51,058 --> 01:33:54,595
WORKING ON THIS PROJECT.

2651
01:33:54,662 --> 01:33:57,431
WE ALSO SPENT A LOT OF TIME

2652
01:33:57,498 --> 01:34:01,035
COMING UP WITH AN ADMINISTRATORS

2653
01:34:01,102 --> 01:34:02,370
MANUAL THAT IS SPECIFICALLY

2654
01:34:02,436 --> 01:34:04,438
DESIGNED FOR PEOPLE WHO ARE

2655
01:34:04,505 --> 01:34:06,107
TESTING PATIENTS OR INDIVIDUALS

2656
01:34:06,173 --> 01:34:08,309
WITH INTELLECTUAL DISABILITIES.

2657
01:34:08,376 --> 01:34:10,277
THEY ARE VERY CHALLENGING TO

2658
01:34:10,344 --> 01:34:11,445
ASSESS, FOR A VARIETY OF

2659
01:34:11,512 --> 01:34:13,447
REASONS, AND THEY ALSO NEED MORE

2660
01:34:13,514 --> 01:34:15,950
SUPPORT THAN MOST PEOPLE WHO ARE

2661
01:34:16,017 --> 01:34:16,417
TYPICALLY DEVELOPING.

2662
01:34:16,484 --> 01:34:17,918
SO WE DEVELOPED SOME

2663
01:34:17,985 --> 01:34:19,020
ACCOMMODATIONS AND SOME

2664
01:34:19,086 --> 01:34:21,188
GUIDELINES AROUND WHAT KINDS OF

2665
01:34:21,255 --> 01:34:23,624
REWARDS CAN BE GIVEN FOR WHICH

2666
01:34:23,691 --> 01:34:25,926
TESTS, HOW MANY PROMPTS CAN BE

2667
01:34:25,993 --> 01:34:26,160
ALLOWED.

2668
01:34:26,227 --> 01:34:27,661
BASICALLY ESSENTIALLY MAKING

2669
01:34:27,728 --> 01:34:28,763
SOME JUST TOUGH DECISIONS ABOUT

2670
01:34:28,829 --> 01:34:31,165
HOW TO KEEP THINGS CONSISTENT

2671
01:34:31,232 --> 01:34:32,266
ACROSS DIFFERENT SITES, AND I

2672
01:34:32,333 --> 01:34:34,902
SHOULD MENTION THIS IS A

2673
01:34:34,969 --> 01:34:35,870
MULTICENTER PROJECT.

2674
01:34:35,936 --> 01:34:37,772
SO WE WANTED TO HAVE A DOCUMENT

2675
01:34:37,838 --> 01:34:39,273
BASICALLY TO HELP PEOPLE KNOW

2676
01:34:39,340 --> 01:34:42,143
HOW TO GIVE THE TEST

2677
01:34:42,209 --> 01:34:42,576
CONSISTENTLY.

2678
01:34:42,643 --> 01:34:46,380
WE USE AN ADMINISTRATION FORM

2679
01:34:46,447 --> 01:34:47,681
WHERE WE HAVE THE EXAMINERS

2680
01:34:47,748 --> 01:34:48,582
RECORD WHETHER THEY DETERMINE

2681
01:34:48,649 --> 01:34:50,184
THE TEST TO BE VALID OR NOT, AND

2682
01:34:50,251 --> 01:34:52,286
IF IT'S NOT, THE REASONS WHY.

2683
01:34:52,353 --> 01:34:53,187
THEY CAN TAKE NOTES.

2684
01:34:53,254 --> 01:34:55,022
AND THEN WHEN WE QUERY THE

2685
01:34:55,089 --> 01:34:57,224
TOOLBOX DATA, WE ALSO QUERY DATA

2686
01:34:57,291 --> 01:34:59,827
FROM THE ADMIN STRAIKS FORM AND

2687
01:34:59,894 --> 01:35:02,696
WE CAN THEN KIND OF SCREEN OUT

2688
01:35:02,763 --> 01:35:07,635
TESTS OR ADMINISTRATIONS THAT WE

2689
01:35:07,701 --> 01:35:09,503
OR THE EXAMINER FELT WAS INVALID

2690
01:35:09,570 --> 01:35:11,639
SO THAT WE DON'T MISTAKENLY USE

2691
01:35:11,705 --> 01:35:13,707
THAT IN OUR ANALYSIS.

2692
01:35:13,774 --> 01:35:16,377
THIS IS JUST KIND OF A QUICK

2693
01:35:16,444 --> 01:35:18,379
VIEW OF SOME OF THE

2694
01:35:18,446 --> 01:35:21,082
REINFORCEMENT GUIDELINES THAT WE

2695
01:35:21,148 --> 01:35:23,084
DEVELOPED THAT ARE DEPENDENT ON

2696
01:35:23,150 --> 01:35:23,884
THESE TESTS.

2697
01:35:23,951 --> 01:35:25,486
THESE DATA ARE A LITTLE BIT OLD

2698
01:35:25,553 --> 01:35:27,121
NOW, BUT I WANTED TO KIND OF

2699
01:35:27,188 --> 01:35:27,855
REFLECT ALL THE WORK THAT WE'VE

2700
01:35:27,922 --> 01:35:29,323
BEEN DOING OVER THE YEARS.

2701
01:35:29,390 --> 01:35:31,158
THIS WAS THE FIRST KIND OF BIG

2702
01:35:31,225 --> 01:35:33,794
PAPER THAT CAME OUT OF OUR

2703
01:35:33,861 --> 01:35:36,397
PROJECT BY MY GRADUATE STUDENT

2704
01:35:36,464 --> 01:35:37,498
REBECCA SHIELDS, AND YOU CAN SEE

2705
01:35:37,565 --> 01:35:41,235
THAT WE STUDIED OVER 200

2706
01:35:41,302 --> 01:35:42,870
INDIVIDUALS WITH INTELLECTUAL

2707
01:35:42,937 --> 01:35:43,204
DISABILITIES.

2708
01:35:43,270 --> 01:35:44,839
WE HAD BEEN FOCUSING ON DOWN'S

2709
01:35:44,905 --> 01:35:46,941
SYNDROME AND FRAGILE-X SYNDROME

2710
01:35:47,007 --> 01:35:49,743
BECAUSE THEY HAVE THE BIGGEST

2711
01:35:49,810 --> 01:35:51,846
TRANSLATIONAL RESEARCH PROGRAMS

2712
01:35:51,912 --> 01:35:52,713
BASICALLY IN THE UNITED STATES

2713
01:35:52,780 --> 01:35:54,782
AND PROBABLY AROUND THE WORLD IN

2714
01:35:54,849 --> 01:35:56,550
TERMS OF TAKING TARGETED

2715
01:35:56,617 --> 01:35:59,053
TREATMENTS FROM ANIMAL MODELS TO

2716
01:35:59,120 --> 01:36:00,921
HUMANS, SO WE FOCUSED ON THAT

2717
01:36:00,988 --> 01:36:03,657
AND THEN WE INCLUDED A

2718
01:36:03,724 --> 01:36:04,658
COMPARISON GROUP OF PEOPLE WITH

2719
01:36:04,725 --> 01:36:07,928
ALL KINDS OF OTHER INTELLECTUAL

2720
01:36:07,995 --> 01:36:08,262
DISABILITIES.

2721
01:36:08,329 --> 01:36:10,431
THIS IS A REALLY USEFUL SLIDE IF

2722
01:36:10,498 --> 01:36:12,399
YOU'RE THINKING ABOUT USING THE

2723
01:36:12,466 --> 01:36:14,702
COGNITION BATTERY IN PEOPLE WITH

2724
01:36:14,768 --> 01:36:15,569
INTELLECTUAL DISABILITIES.

2725
01:36:15,636 --> 01:36:20,174
SO WHAT YOU SEE HERE IS MENTAL

2726
01:36:20,241 --> 01:36:23,544
AGE HERE ACROSS THE TOP AS

2727
01:36:23,611 --> 01:36:28,582
DETERMINED BY THE STANFORD

2728
01:36:28,649 --> 01:36:29,250
BINAY IQ TEST.

2729
01:36:29,316 --> 01:36:31,118
THAT DOESN'T REALLY POINT VERY

2730
01:36:31,185 --> 01:36:31,752
WELL.

2731
01:36:31,819 --> 01:36:32,219
OKAY.

2732
01:36:32,286 --> 01:36:34,388
EACH OF THE TOOLBOX TESTS ARE

2733
01:36:34,455 --> 01:36:35,789
LISTED ON THE LEFT AND THEN THIS

2734
01:36:35,856 --> 01:36:37,558
IS JUST SHOWING YOU WHAT

2735
01:36:37,625 --> 01:36:40,060
PRACTICE PORTION OF EACH AGE

2736
01:36:40,127 --> 01:36:44,698
GROUP WAS ABLE TO DO THE TEST

2737
01:36:44,765 --> 01:36:46,100
AND YIELDED A VALID SCORE.

2738
01:36:46,167 --> 01:36:47,635
YOU CAN SEE HOWCH THE BATTERY

2739
01:36:47,701 --> 01:36:49,170
REALLY DOES WELL WITH A MENTAL

2740
01:36:49,236 --> 01:36:53,374
AGE ANYWHERE FROM ABOUT 5.0

2741
01:36:53,440 --> 01:36:55,476
YEARS AND UP AND THEN A LITTLE

2742
01:36:55,543 --> 01:36:58,012
BIT SPOTTY AT MENTAL AGE OF FOUR

2743
01:36:58,078 --> 01:37:00,981
AND THEN IT DROPS OFF MORE

2744
01:37:01,048 --> 01:37:02,383
SIGNIFICANTLY FOR THE FLUID

2745
01:37:02,449 --> 01:37:04,151
REASON TEST AND MENTAL AGE OF

2746
01:37:04,218 --> 01:37:05,886
THREE AND BELOW, ALTHOUGH IT

2747
01:37:05,953 --> 01:37:09,390
DOES QUITE WELL STILL WITH

2748
01:37:09,456 --> 01:37:10,491
CRYSTALLIZED COGNITION, AS YOU

2749
01:37:10,558 --> 01:37:14,228
CAN SEE WITH PICTURE VOCABULARY

2750
01:37:14,295 --> 01:37:17,498
AND ORAL READING AT THE BOTTOM.

2751
01:37:17,565 --> 01:37:19,600
WE'VE DONE A LOT OF WORK LOOKING

2752
01:37:19,667 --> 01:37:21,435
AT TEST/RETEST RELIABILITY.

2753
01:37:21,502 --> 01:37:23,304
FOR EXAMPLE, OVER A FOUR-MONTH

2754
01:37:23,370 --> 01:37:25,039
PERIOD -- SORRY, A ONE-MONTH

2755
01:37:25,105 --> 01:37:28,008
PERIOD, AND ALSO TRYING TO

2756
01:37:28,075 --> 01:37:29,109
DETERMINE WHETHER THERE ARE ANY

2757
01:37:29,176 --> 01:37:29,944
PRACTICE EFFECTS.

2758
01:37:30,010 --> 01:37:32,846
AND YOU CAN SEE THESE ICC'S ARE

2759
01:37:32,913 --> 01:37:34,148
GENERALLY PRETTY GOOD AND IN

2760
01:37:34,215 --> 01:37:36,884
LINE WITH WHAT YOU SEE USING

2761
01:37:36,951 --> 01:37:38,319
OTHER TEST INSIDE THIS KIND OF

2762
01:37:38,385 --> 01:37:40,054
POPULATION MUCH THE ONLY

2763
01:37:40,120 --> 01:37:42,590
EXCEPTION REALLY WAS PICTURE

2764
01:37:42,656 --> 01:37:44,225
SEQUENCE MEMORY, THAT'S THE

2765
01:37:44,291 --> 01:37:44,992
EPISODIC MEMORY TEST.

2766
01:37:45,059 --> 01:37:46,860
SO EVEN WHEN WE USED THE SAME --

2767
01:37:46,927 --> 01:37:49,129
THIS IS A WEIRD POINTER -- EVEN

2768
01:37:49,196 --> 01:37:52,299
THOUGH WE USED THE SAME VERSION

2769
01:37:52,366 --> 01:37:54,835
AT BOTH TIME POINTS, WE FOUND

2770
01:37:54,902 --> 01:37:56,904
THAT NOT TO BE AS RELIABLE AS

2771
01:37:56,971 --> 01:37:57,771
THE OTHER MEASURES.

2772
01:37:57,838 --> 01:38:01,375
BUT THE COMPOSITES DID QUITE

2773
01:38:01,442 --> 01:38:01,575
WELL.

2774
01:38:01,642 --> 01:38:04,245
IN TERMS OF KNOWN GROUPS

2775
01:38:04,311 --> 01:38:06,180
VALIDITY, SO I WAS MENTIONING

2776
01:38:06,247 --> 01:38:07,514
CAN YOU FIND THE KIND OF

2777
01:38:07,581 --> 01:38:08,415
DEFICITS THAT YOU WOULD EXPECT

2778
01:38:08,482 --> 01:38:12,886
TO SEE IN A POPULATION, AND WE

2779
01:38:12,953 --> 01:38:14,855
NOTED THAT THE DOWN'S SYNDROME

2780
01:38:14,922 --> 01:38:16,490
GROUP AND THE FRAGILE-X GROUP

2781
01:38:16,557 --> 01:38:19,360
REALLY HAD VERY PROMINENT

2782
01:38:19,426 --> 01:38:21,695
EXECUTIVE FUNCTION WEAK NS,

2783
01:38:21,762 --> 01:38:23,497
WHICH IS KNOWN IN THE

2784
01:38:23,564 --> 01:38:23,797
LITERATURE.

2785
01:38:23,864 --> 01:38:25,165
SO WE WERE HAPPY TO SEE THAT IT

2786
01:38:25,232 --> 01:38:27,001
WAS PICKING UP ON SOME FEAN

2787
01:38:27,067 --> 01:38:29,536
TYPES THAT WE KNOW ABOUT IN

2788
01:38:29,603 --> 01:38:30,571
INTELLECTUAL DISABILITIES.

2789
01:38:30,638 --> 01:38:33,674
THIS WAS ALSO DONE BY REBECCA.

2790
01:38:33,741 --> 01:38:35,109
-- SOME PHENOTYPES.

2791
01:38:35,175 --> 01:38:36,977
THIS IS ONE OF MY FAVORITE

2792
01:38:37,044 --> 01:38:38,078
GRAPHS FROM ALL OF OUR WORK.

2793
01:38:38,145 --> 01:38:40,180
IT SHOWS THE ASSOCIATION BETWEEN

2794
01:38:40,247 --> 01:38:42,149
THE COGNITION COMPOSITE SCORE,

2795
01:38:42,216 --> 01:38:45,419
THE TOTAL COMPOSITE SCORE ON THE

2796
01:38:45,486 --> 01:38:47,521
TOOLBOX AGAINST THE STANFORD

2797
01:38:47,588 --> 01:38:49,223
BINAY FULL SCALE IQ, AND ASIDE

2798
01:38:49,290 --> 01:38:51,425
FROM THE FACT THAT THERE'S A

2799
01:38:51,492 --> 01:38:52,526
STRONG CORRELATION, WHICH YOU

2800
01:38:52,593 --> 01:38:55,829
CAN SEE HERE, THE REGRESSION

2801
01:38:55,896 --> 01:38:57,331
LINES REALLY FALL KIND OF WHERE

2802
01:38:57,398 --> 01:38:59,099
THEY OUGHT TO BE IN TERMS OF NOT

2803
01:38:59,166 --> 01:39:00,968
BEING SKEWED TOO HIGH OR TOO

2804
01:39:01,035 --> 01:39:04,905
LOW, SO A 25 ON ONE TEST IS

2805
01:39:04,972 --> 01:39:07,508
RELATIVELY A GOOD ONE TO A 25 --

2806
01:39:07,574 --> 01:39:09,176
IS EQUIVALENT TO 25 ON ANOTHER

2807
01:39:09,243 --> 01:39:11,545
TEST AND ON UP TO BELOW THE

2808
01:39:11,612 --> 01:39:12,413
AVERAGE RANGE.

2809
01:39:12,479 --> 01:39:15,582
SO SOME REASSURING KIND OF

2810
01:39:15,649 --> 01:39:18,419
CROSS-VALIDITY WITH ANOTHER

2811
01:39:18,485 --> 01:39:20,054
MEASURE.

2812
01:39:20,120 --> 01:39:20,788
REBECCA'S -- I HAVE A MINUTE OR

2813
01:39:20,854 --> 01:39:21,155
TWO?

2814
01:39:21,221 --> 01:39:22,990
OKAY, I'LL TRY TO GO FASTER.

2815
01:39:23,057 --> 01:39:24,758
REBECCA HAS DONE SOME

2816
01:39:24,825 --> 01:39:26,160
LONGITUDINAL MODELING TO LOOK AT

2817
01:39:26,226 --> 01:39:27,261
SENSITIVITY OF CHANGE OVER TIME

2818
01:39:27,328 --> 01:39:28,929
AND HAS SHOWN SOME REALLY

2819
01:39:28,996 --> 01:39:30,998
INTERESTING KIND OF DEFERENCES

2820
01:39:31,065 --> 01:39:36,136
ACROSS SYNDROMES AND ACROSS

2821
01:39:36,203 --> 01:39:38,172
COGNITION TESTS, COMPONENTS, AND

2822
01:39:38,238 --> 01:39:39,673
I WOULD URGE YOU TO LOOK AT THIS

2823
01:39:39,740 --> 01:39:41,775
PAPER IF YOU'RE INTERESTED IN

2824
01:39:41,842 --> 01:39:43,177
LOOKING AT DEVELOPMENT OF THE

2825
01:39:43,243 --> 01:39:43,410
TOOLBOX.

2826
01:39:43,477 --> 01:39:45,245
THIS IS JUST AN EXAMPLE OF KIND

2827
01:39:45,312 --> 01:39:48,515
OF AT DIFFERENT AGE POINTS WHICH

2828
01:39:48,582 --> 01:39:51,051
TESTS ARE DETECTING SIGNIFICANT

2829
01:39:51,118 --> 01:39:53,187
GROWTH IN COGNITION IN

2830
01:39:53,253 --> 01:39:54,088
INDIVIDUALS WITH DOWN'S

2831
01:39:54,154 --> 01:39:56,724
SYNDROME, SO YOU CAN SEE MORE

2832
01:39:56,790 --> 01:39:58,392
GROWTH CENTERED AT AROUND AGE

2833
01:39:58,459 --> 01:40:00,127
TEN AND AGE SIXTEEN AND THEN

2834
01:40:00,194 --> 01:40:02,329
LESS GROWTH AND MORE PLATEAUING

2835
01:40:02,396 --> 01:40:07,801
LATER ON IN DEVELOPMENT.

2836
01:40:07,868 --> 01:40:11,372
ANDY DECOPILIS WHO IS WORKING IN

2837
01:40:11,438 --> 01:40:12,606
THE ROOM, HAS BEEN WORKING WITH

2838
01:40:12,673 --> 01:40:14,475
ME, WELL, HE'S DONE ALL THE

2839
01:40:14,541 --> 01:40:15,342
WORK, WE'VE BEEN WORKING AND

2840
01:40:15,409 --> 01:40:16,777
TALK SAYING LOT TOGETHER ABOUT

2841
01:40:16,844 --> 01:40:19,813
HOW TO LOOK AT CHANGE IN TOOLBOX

2842
01:40:19,880 --> 01:40:21,382
COGNITION ALONG WITH DEVELOPMENT

2843
01:40:21,448 --> 01:40:25,853
IN DAILY LIFE AS MEASURED BY THE

2844
01:40:25,919 --> 01:40:26,987
VINELAND ADAPTIVE BEHAVIOR

2845
01:40:27,054 --> 01:40:32,960
SCALES AND ANDY HAS DONE SOME

2846
01:40:33,026 --> 01:40:34,395
FANTASTIC WORK SHOWING SOME

2847
01:40:34,461 --> 01:40:36,697
COMPONENTS OF THE NIH TOOLBOX

2848
01:40:36,764 --> 01:40:37,398
WHEN THEY ARE MOVING ASK THERE

2849
01:40:37,464 --> 01:40:38,866
ARE GAINS IN THESE INDIVIDUALS,

2850
01:40:38,932 --> 01:40:40,634
WE ALSO SEE GAINS IN SOME

2851
01:40:40,701 --> 01:40:42,603
ASPECTS OF ADAPTIVE BEHAVIOR

2852
01:40:42,669 --> 01:40:46,974
ESPECIALLY IN DAILY LIVING

2853
01:40:47,040 --> 01:40:47,207
SKILLS.

2854
01:40:47,274 --> 01:40:49,476
ANDY HAS A POSTER, SO I WOULD

2855
01:40:49,543 --> 01:40:50,677
ENCOURAGE HIM TO COME AND LOOK

2856
01:40:50,744 --> 01:40:52,546
AT HIS POSTER AND TALK ABOUT HIS

2857
01:40:52,613 --> 01:40:53,847
NODLE YOU'RE SO INCLINED TO

2858
01:40:53,914 --> 01:40:57,818
LEARN ABOUT THESE SOPHISTICATED

2859
01:40:57,885 --> 01:40:58,118
STATISTICS.

2860
01:40:58,185 --> 01:41:00,888
DR. BARRY CURBIS ALSO HAS A

2861
01:41:00,954 --> 01:41:02,523
POSTER LOOKING AT SENSITIVITY TO

2862
01:41:02,589 --> 01:41:03,957
CHANGE IN THE TOOLBOX WITHIN A

2863
01:41:04,024 --> 01:41:06,794
CLINICAL TRIAL HEADED BY TETRA

2864
01:41:06,860 --> 01:41:11,932
PHARMACEUTICALS LOOKING AT AN

2865
01:41:11,999 --> 01:41:13,066
INHIBITOR, I WON'T SPEND TOO

2866
01:41:13,133 --> 01:41:14,234
MUCH TIME BECAUSE I THINK I'M

2867
01:41:14,301 --> 01:41:16,503
RUNNING OUT, BUT THE BASIC

2868
01:41:16,570 --> 01:41:17,838
RESULT OR IMPORTANT THING ON

2869
01:41:17,905 --> 01:41:21,008
TELL YOU IS THAT THE TOOLBOX

2870
01:41:21,074 --> 01:41:22,409
CRYSTALLIZED COGNITION WAS

2871
01:41:22,476 --> 01:41:23,544
SENSITIVE TO THE TREATMENT

2872
01:41:23,610 --> 01:41:27,014
BENEFITS OF THIS TARGETED

2873
01:41:27,080 --> 01:41:28,449
TREATMENT FOR FRAGILE-X

2874
01:41:28,515 --> 01:41:29,082
SYNDROME.

2875
01:41:29,149 --> 01:41:30,851
THESE ARE SOME OF THE OTHER

2876
01:41:30,918 --> 01:41:33,287
TRIALS THAT ARE EITHER ONGOING

2877
01:41:33,353 --> 01:41:35,222
OR PLANNED OR ARE USING THE

2878
01:41:35,289 --> 01:41:36,523
TOOLBOX, EITHER AS A PRIMARY ARE

2879
01:41:36,590 --> 01:41:39,259
A KEY SECONDARY ENDPOINT.

2880
01:41:39,326 --> 01:41:41,895
MOSTLY ON FRAGILE-X SYNDROME,

2881
01:41:41,962 --> 01:41:44,965
BUT AT THE BOTTOM THERE I NOTE

2882
01:41:45,032 --> 01:41:49,236
THE ONE INITIATIVE BY AELIS

2883
01:41:49,303 --> 01:41:51,538
PHARMACEUTICALS THAT'S LOOKING

2884
01:41:51,605 --> 01:41:57,544
AT AN ENDOCANNABINOID RECEPTOR

2885
01:41:57,611 --> 01:41:58,645
IN DOWNS SIN DROARNLINGS REALLY

2886
01:41:58,712 --> 01:42:00,814
EXCITED TO SEE THAT GROUP

2887
01:42:00,881 --> 01:42:02,216
PICKING THAT UP AS AN OUTCOME

2888
01:42:02,282 --> 01:42:02,883
MEASURE AS WELL.

2889
01:42:02,950 --> 01:42:05,118
THESE ARE ALL MY COLLABORATORS,

2890
01:42:05,185 --> 01:42:06,887
IT'S A MULTICENTER STUDY, SO

2891
01:42:06,954 --> 01:42:09,690
WE'VE HAD TEN YEARS OF WORK AND

2892
01:42:09,756 --> 01:42:10,657
SO WE'VE HAD DIFFERENT STAFF

2893
01:42:10,724 --> 01:42:11,859
MEMBERS COMING AND GOING BUT

2894
01:42:11,925 --> 01:42:14,828
LOTS AND LOTS OF CONTRIBUTIONS

2895
01:42:14,895 --> 01:42:18,532
ACROSS MOSTLY UC DAVIS, RUSH,

2896
01:42:18,599 --> 01:42:21,935
LED BY LIZ BERRY-CRAVIS, YEULT

2897
01:42:22,002 --> 01:42:24,438
OF DENVER OR REGIS WITH KAREN

2898
01:42:24,505 --> 01:42:27,541
RILEY AND JEANINE COLEMAN AND

2899
01:42:27,608 --> 01:42:29,409
CRAIG ERICSON AT SIN SENATE TI

2900
01:42:29,476 --> 01:42:30,844
AND ALL THE HELP AND SUPPORT

2901
01:42:30,911 --> 01:42:32,446
FROM THE TOOLBOX TEAM AT

2902
01:42:32,513 --> 01:42:32,779
NORTHWESTERN.

2903
01:42:32,846 --> 01:42:34,147
SO I WILL STOP THERE.

2904
01:42:34,214 --> 01:42:44,391
THANK YOU.

2905
01:42:44,858 --> 01:42:47,294
>> AND I WILL HAVE OUR SPEAKERS

2906
01:42:47,361 --> 01:42:48,829
COME UP.

2907
01:42:48,896 --> 01:42:50,631
THIS TABLE OR THE Q & A SESSION.

2908
01:42:50,697 --> 01:42:55,469
DO YOU HAVE ANY QUESTIONS FOR

2909
01:42:55,536 --> 01:42:58,872
THEM?

2910
01:42:58,939 --> 01:43:09,416
THE MICROPHONE IS UP FRONT.

2911
01:43:26,233 --> 01:43:28,969
>> IT'S BETTER FOR PEOPLE

2912
01:43:29,036 --> 01:43:29,836
ONLINE, POTENTIALLY.

2913
01:43:29,903 --> 01:43:32,706
I CAN TRY TO REPEAT THINGS THEY

2914
01:43:32,773 --> 01:43:35,842
DON'T PICK UP.

2915
01:43:35,909 --> 01:43:38,078
>> THANK YOU FOR ALL THE TALKS.

2916
01:43:38,145 --> 01:43:40,480
I HAVE A QUESTION, I GUESS I'LL

2917
01:43:40,547 --> 01:43:42,449
ASK ONE OF YOU IF YOU CAN

2918
01:43:42,516 --> 01:43:44,318
SYNTHESIZE ACROSS THE TALKS,

2919
01:43:44,384 --> 01:43:46,086
THERE WERE A COUPLE DIFFERENT

2920
01:43:46,153 --> 01:43:49,923
LABORS OF RESULTS IN TERMS OF

2921
01:43:49,990 --> 01:43:50,457
IQ.

2922
01:43:50,524 --> 01:43:51,892
I WONDER IF YOU WANT TO TALK

2923
01:43:51,959 --> 01:43:52,559
ABOUT THAT.

2924
01:43:52,626 --> 01:43:54,294
YOU TWO ARE PITTED AGAINST EACH

2925
01:43:54,361 --> 01:43:54,494
OTHER.

2926
01:43:54,561 --> 01:43:57,364
>> WHICH TESTS?

2927
01:43:57,431 --> 01:44:02,402
>> SO WE USED A COMBINATION OF

2928
01:44:02,469 --> 01:44:04,404
(?) AND I KNOW -- OF IQ SCALES.

2929
01:44:04,471 --> 01:44:08,408
I KNOW YOU ALL USED STANFORD

2930
01:44:08,475 --> 01:44:09,509
BINET SCORING, I THINK THAT

2931
01:44:09,576 --> 01:44:11,511
MIGHT BE PART OF IT, IS THAT

2932
01:44:11,578 --> 01:44:13,046
THESE ARE JUST SLIGHTLY

2933
01:44:13,113 --> 01:44:15,949
DIFFERENT GOING ON THE STANFORD,

2934
01:44:16,016 --> 01:44:16,683
THAT YOU COULD PRESENT.

2935
01:44:16,750 --> 01:44:19,419
I THINK THAT MAY BE SOME OF IT.

2936
01:44:19,486 --> 01:44:25,492
I THINK ALSO HE WILL THE --

2937
01:44:25,559 --> 01:44:25,993
(AWAY FROM MICROPHONE).

2938
01:44:26,059 --> 01:44:29,329
>> WELL, YEAH, FOUR EFFECTS ARE

2939
01:44:29,396 --> 01:44:31,198
A PROBLEM IN LOCALITIES OF

2940
01:44:31,264 --> 01:44:32,499
STUDIES, IN INTELLECTUAL

2941
01:44:32,566 --> 01:44:33,934
DISABILITIES, SO I'M SURE WE REC

2942
01:44:34,001 --> 01:44:38,639
TI FADE THAT WITH THE SCORING WE

2943
01:44:38,705 --> 01:44:38,872
USED.

2944
01:44:38,939 --> 01:44:41,208
EVEN WHEN WE USED THE STANDARD

2945
01:44:41,274 --> 01:44:43,010
SCORE THAT'S NOT THE DEVIATION,

2946
01:44:43,076 --> 01:44:45,445
I THINK WE STILL GET FAIRLY

2947
01:44:45,512 --> 01:44:47,414
DECENT CORRELATIONS WITH THE

2948
01:44:47,481 --> 01:44:47,981
TOOLBOX.

2949
01:44:48,048 --> 01:44:50,150
YEAH, I REALLY HOW TO EXPLAIN

2950
01:44:50,217 --> 01:44:50,317
IT.

2951
01:44:50,384 --> 01:44:52,552
I THINK, YOU KNOW, IT'S REALLY

2952
01:44:52,619 --> 01:44:53,520
OFTENTIMES YOU JUST HAVE TO GO

2953
01:44:53,587 --> 01:44:54,855
DOWN AND LOOK AT THE ITEMS THAT

2954
01:44:54,921 --> 01:44:56,657
PEOPLE ARE ADMINISTERED AND SEE

2955
01:44:56,723 --> 01:44:58,659
HOW MUCH OVERLAP THERE IS IN THE

2956
01:44:58,725 --> 01:45:01,962
SCRUBLGHTS THAT ARE BEING TESTET

2957
01:45:02,029 --> 01:45:03,864
ARE BEING TESTED.

2958
01:45:03,930 --> 01:45:05,932
I DON'T KNOW HOW ELSE TO...

2959
01:45:05,999 --> 01:45:10,103
>> I KNOW ANOTHER ISSUE WE RAN

2960
01:45:10,170 --> 01:45:11,938
INTO WITH OUR POPULATION WAS THE

2961
01:45:12,005 --> 01:45:16,810
NUMBER ONE DROPOUT REASON WAS

2962
01:45:16,877 --> 01:45:17,177
ATTENTION.

2963
01:45:17,244 --> 01:45:18,745
SO IN ADDITION TO EITHER NOT

2964
01:45:18,812 --> 01:45:20,080
PASSING -- LIKE THE REASON THEY

2965
01:45:20,147 --> 01:45:22,182
WEREN'T PASSING THE PRACTICE WAS

2966
01:45:22,249 --> 01:45:23,383
BECAUSE THEY COULD NOT ATTEND TO

2967
01:45:23,450 --> 01:45:24,584
THE TASK.

2968
01:45:24,651 --> 01:45:28,088
SO SOME LIKE THE FLANKER AND THE

2969
01:45:28,155 --> 01:45:30,524
DCCS DEFINITELY HAVE FAIRLY

2970
01:45:30,590 --> 01:45:31,625
SPECIFIC MEASURING PART SO IT

2971
01:45:31,692 --> 01:45:35,128
MAYBE RELATED TO THAT, WHERE

2972
01:45:35,195 --> 01:45:36,863
THEY'RE NOT EVEN THROUGHOUT

2973
01:45:36,930 --> 01:45:39,399
TESTING WE HAD TO REDIRECT THEM

2974
01:45:39,466 --> 01:45:41,768
A NUMBER OF TIMES BECAUSE THEY

2975
01:45:41,835 --> 01:45:43,537
WOULD BE TRYING TO TALK TO THE

2976
01:45:43,603 --> 01:45:44,938
EXAMINER AND THINGS LIKE THAT,

2977
01:45:45,005 --> 01:45:49,409
SO IT MAYBE RELATED TO THAT.

2978
01:45:49,476 --> 01:45:51,211
>> I'M SORRY, JUST IF I COULD.

2979
01:45:51,278 --> 01:45:53,513
WOULD THERE BE ANYTHING UNIQUE

2980
01:45:53,580 --> 01:45:56,583
ABOUT WILLIAMS SYNDROME IN TERMS

2981
01:45:56,650 --> 01:45:59,453
OF THEIR VISUAL-SPATIAL

2982
01:45:59,519 --> 01:46:00,554
CRAZINESS -- NOT CRAZINESS, JUST

2983
01:46:00,620 --> 01:46:01,855
THEY HAVE SO MUCH TROUBLE WITH

2984
01:46:01,922 --> 01:46:02,289
IT.

2985
01:46:02,355 --> 01:46:03,957
IS THERE SOMETHING UNIQUE ABOUT

2986
01:46:04,024 --> 01:46:05,158
THAT THAT WOULD MAKE THE

2987
01:46:05,225 --> 01:46:08,995
CORRELATION MORE DIFFICULT TO

2988
01:46:09,062 --> 01:46:09,229
DETECT?

2989
01:46:09,296 --> 01:46:11,832
>> I DON'T THINK SO BECAUSE THE

2990
01:46:11,898 --> 01:46:16,870
TASK WE USED -- (AWAY FROM

2991
01:46:16,937 --> 01:46:21,475
MICROPHONE), THE DCCS AND THE

2992
01:46:21,541 --> 01:46:21,708
FLANKER.

2993
01:46:21,775 --> 01:46:25,679
>> RIGHT.

2994
01:46:25,746 --> 01:46:27,380
>> WELL, RIGHT.

2995
01:46:27,447 --> 01:46:29,683
SO THEIR MAIN THING, VERBAL AND

2996
01:46:29,750 --> 01:46:30,350
NONVERBAL.

2997
01:46:30,417 --> 01:46:34,221
LIKE THEIR VERBAL SCALES --

2998
01:46:34,287 --> 01:46:39,593
(AWAY FROM MICROPHONE).

2999
01:46:39,659 --> 01:46:43,497
>> TOOLBOX DOESN'T REALLY HAVE

3000
01:46:43,563 --> 01:46:44,664
VISUAL-SPATIAL PROCESSING.

3001
01:46:44,731 --> 01:46:46,166
>> NO.

3002
01:46:46,233 --> 01:46:49,336
>> WHEREAS THE -- (AWAY FROM

3003
01:46:49,402 --> 01:46:49,703
MICROPHONE).

3004
01:46:49,770 --> 01:46:50,137
THAT COULD BE 6789.

3005
01:46:50,203 --> 01:47:00,847
COULD BE.>> RIGHT.

3006
01:47:02,048 --> 01:47:04,751
>> I WONDERED A BIT, DO YOU

3007
01:47:04,818 --> 01:47:07,053
THINK THERE'S -- SO IS THERE

3008
01:47:07,120 --> 01:47:08,488
ENOUGH VARIABILITY IN THE RAW

3009
01:47:08,555 --> 01:47:10,056
SCORES WHEN YOU'RE LOOKING AT

3010
01:47:10,123 --> 01:47:12,659
THESE KIND OF FLOOR EFFECTS THAT

3011
01:47:12,726 --> 01:47:15,162
POTENTIALLY RENORMING IT FOR

3012
01:47:15,228 --> 01:47:17,063
THESE TYPES OF CLINICAL

3013
01:47:17,130 --> 01:47:18,532
POPULATIONS WOULD HAVE UTILITY?

3014
01:47:18,598 --> 01:47:22,302
>> SO WE DIDN'T RENORM, BUT WE

3015
01:47:22,369 --> 01:47:23,837
LEVERAGED THE NORMATIVE DATA

3016
01:47:23,904 --> 01:47:26,006
THAT THE PUBLISHERS GAVE US

3017
01:47:26,072 --> 01:47:26,606
ACCESS TO.

3018
01:47:26,673 --> 01:47:28,875
FOR EXAMPLE, FROM THE STANDFORD

3019
01:47:28,942 --> 01:47:35,448
BINET AND WE ESSENTIALLY

3020
01:47:35,515 --> 01:47:37,651
DISREGARDED THEIR THIS

3021
01:47:37,717 --> 01:47:38,585
WINDSORRIZING, THEIR CUTTING OFF

3022
01:47:38,652 --> 01:47:40,487
AT A CERTAIN POINT, AND WE JUST

3023
01:47:40,554 --> 01:47:42,189
CALCULATE THE NUMBER OF STANDARD

3024
01:47:42,255 --> 01:47:43,456
DEVIATIONS ESSENTIAL OF

3025
01:47:43,523 --> 01:47:44,991
DEVIATION FROM AVERAGE USING THE

3026
01:47:45,058 --> 01:47:45,859
RAW SCORES.

3027
01:47:45,926 --> 01:47:47,260
SO THAT WAS REALLY EFFECTIVE.

3028
01:47:47,327 --> 01:47:48,829
IT WASN'T RENORMING, BUT IT WAS

3029
01:47:48,895 --> 01:47:50,797
A WAY TO GET SOMETHING THAT

3030
01:47:50,864 --> 01:47:55,602
GIVES US MORE SENSITIVITY TO

3031
01:47:55,669 --> 01:47:55,902
DIFFERENCES.

3032
01:47:55,969 --> 01:47:58,004
>> STILL RELATED TO THE TOOLBOX,

3033
01:47:58,071 --> 01:47:58,772
I THINK POTENTIALLY MY

3034
01:47:58,839 --> 01:48:01,074
UNDERSTANDING IS THAT THERE'S NO

3035
01:48:01,141 --> 01:48:03,043
REASON IT NEEDS TO BE

3036
01:48:03,109 --> 01:48:07,647
WINDSORRIZED AT 64.

3037
01:48:07,714 --> 01:48:09,382
>> YES, YES.

3038
01:48:09,449 --> 01:48:12,786
THANKS FOR REMINDING ME.

3039
01:48:12,853 --> 01:48:13,053
[LAUGHTER]

3040
01:48:13,119 --> 01:48:15,956
>> SO ON THAT POINT, BECAUSE OUR

3041
01:48:16,022 --> 01:48:17,057
POPULATION, AS YOU CAN SEE,

3042
01:48:17,123 --> 01:48:18,425
THEIR SCORE IS NEARLY TWO

3043
01:48:18,491 --> 01:48:22,529
STANDARD DEVIATIONS BELOW, SO WE

3044
01:48:22,596 --> 01:48:23,930
ACTUALLY CALCULATED, FOR

3045
01:48:23,997 --> 01:48:26,366
EXAMPLE, IF THEY DON'T PASS THE

3046
01:48:26,433 --> 01:48:27,901
PRACTICE TEST OR THEY GOT ZERO,

3047
01:48:27,968 --> 01:48:31,071
SO WE HAVE TO CALCULATE THE

3048
01:48:31,137 --> 01:48:33,573
SCORE RATHER THAN, YOU KNOW, USE

3049
01:48:33,640 --> 01:48:35,442
THE SAME SCORE.

3050
01:48:35,508 --> 01:48:36,109
YEAH.

3051
01:48:36,176 --> 01:48:44,317
NOT WINDSORIZE.

3052
01:48:44,384 --> 01:48:46,720
>> SO FROM THOSE WHO HAVE USED

3053
01:48:46,786 --> 01:48:48,021
IT LONGITUDINALLY, I KNOW THAT

3054
01:48:48,088 --> 01:48:49,389
SOME OF THE SCORES ARE CHANGING

3055
01:48:49,456 --> 01:48:50,957
WITH THE VERSION THREE TO MAKE

3056
01:48:51,024 --> 01:48:52,959
IT, I THINK, MORE AMENABLE TO

3057
01:48:53,026 --> 01:48:55,462
CHANGE OVER TIME, BUT WHAT DO WE

3058
01:48:55,528 --> 01:48:57,898
THINK NEEDS TO HAPPEN NOW TO

3059
01:48:57,964 --> 01:48:59,633
MAKE THE MEASURE READY FOR IT

3060
01:48:59,699 --> 01:49:02,502
BEING USED AS AN ENDPOINT OR

3061
01:49:02,569 --> 01:49:03,470
SENSITIVE TO CHANGE IN THESE

3062
01:49:03,536 --> 01:49:06,239
KIND OF TRIALS?

3063
01:49:06,306 --> 01:49:07,908
>> SINCE I THINK ABOUT THIS ALL

3064
01:49:07,974 --> 01:49:09,809
THE TIME, I GUESS I'LL TRY TO

3065
01:49:09,876 --> 01:49:12,712
ANSWER IT.

3066
01:49:12,779 --> 01:49:14,147
SO WE'VE DONE A LOT OF THE WORK,

3067
01:49:14,214 --> 01:49:16,049
I WOULD SAY, ALREADY THAT THE

3068
01:49:16,116 --> 01:49:17,517
FDA IS INTERESTED IN.

3069
01:49:17,584 --> 01:49:18,852
THERE ARE SOME GAPS, THOUGH

3070
01:49:18,919 --> 01:49:21,988
THAT, ARE SUPER-IMPORTANT TO

3071
01:49:22,055 --> 01:49:23,924
FILL, AND DR. CAT IS ADDRESSING

3072
01:49:23,990 --> 01:49:27,027
ONE OF THEM, WHICH IS CLINICALLY

3073
01:49:27,093 --> 01:49:28,662
MEANINGFUL CHANGE.

3074
01:49:28,728 --> 01:49:30,530
SO WHEN A SINGLE PATIENT, YOU

3075
01:49:30,597 --> 01:49:32,666
KNOW, HAS AN IMPROVEMENT, WE

3076
01:49:32,732 --> 01:49:33,934
DON'T KNOW WHETHER TO INTERPRET

3077
01:49:34,000 --> 01:49:36,770
THAT AS A CLINICALLY MEANINGFUL

3078
01:49:36,836 --> 01:49:37,871
IMPROVEMENT OR NOT.

3079
01:49:37,938 --> 01:49:39,940
SO WE NEED TO DO SOME ANALYSES

3080
01:49:40,006 --> 01:49:43,009
THAT WILL HELP US GIVE AT LEAST

3081
01:49:43,076 --> 01:49:45,512
AN ESTIMATE WITH A CONFIDENCE

3082
01:49:45,578 --> 01:49:46,947
INTERVAL AROUND IT OF HOW MANY

3083
01:49:47,013 --> 01:49:50,450
POINTS OF GAIN ON EACH COMPONENT

3084
01:49:50,517 --> 01:49:51,618
IS CONSIDERED CLINICALLY

3085
01:49:51,685 --> 01:49:51,952
MEANINGFUL.

3086
01:49:52,018 --> 01:49:54,821
SO I THINK THAT'S REALLY

3087
01:49:54,888 --> 01:49:55,088
IMPORTANT.

3088
01:49:55,155 --> 01:49:57,991
I THINK THE WORK THAT ANDY IS

3089
01:49:58,058 --> 01:49:59,960
DOING LOOKING AT ASSOCIATIONS

3090
01:50:00,026 --> 01:50:00,961
WITH WHAT'S HAPPENING IN THEIR

3091
01:50:01,027 --> 01:50:04,331
DAILY LIFE IS IMPORTANT.

3092
01:50:04,397 --> 01:50:08,702
AND I THINK JUST MORE WORK TO

3093
01:50:08,768 --> 01:50:10,770
EDUCATE THE DECISION MAKERS

3094
01:50:10,837 --> 01:50:12,872
ABOUT, YOU KNOW, WHAT THE

3095
01:50:12,939 --> 01:50:15,041
STREJTS AND LIMITATIONS --

3096
01:50:15,108 --> 01:50:17,010
STREJTS AND LIMITATION --

3097
01:50:17,077 --> 01:50:18,545
STRENGTHS AND LIMITATIONS ARE OF

3098
01:50:18,611 --> 01:50:21,147
THE TOOLBOX AND SEEING IT DONE

3099
01:50:21,214 --> 01:50:22,515
IN MORE TRIALS AND HOW IT

3100
01:50:22,582 --> 01:50:22,816
PERFORMS.

3101
01:50:22,882 --> 01:50:25,885
LIDS, DOCUMENT TO ADD TO THAT?

3102
01:50:25,952 --> 01:50:29,222
DO YOU WANT TO GET UP TO THE

3103
01:50:29,289 --> 01:50:38,231
MICROPHONE?

3104
01:50:38,298 --> 01:50:40,934
>> FROM BEING AT FDA MEETINGS.

3105
01:50:41,001 --> 01:50:42,335
SO IT SEEMS LIKE THE THING THEY

3106
01:50:42,402 --> 01:50:44,337
WANT IS TO REALLY BE ABLE TO SEE

3107
01:50:44,404 --> 01:50:47,273
THIS VALIDATION DATA BECAUSE WE

3108
01:50:47,340 --> 01:50:48,708
HAD A LONG DISCUSSION ABOUT IT

3109
01:50:48,775 --> 01:50:51,344
WHEN WE FIRST WENT IN WITH TETRA

3110
01:50:51,411 --> 01:50:52,712
AND THEY SEEM TO P THE DATA IN

3111
01:50:52,779 --> 01:50:54,180
ADDITION TO BEING PUBLISHED IN

3112
01:50:54,247 --> 01:50:55,448
THE LITERATURE, TO BE SOMETHING

3113
01:50:55,515 --> 01:50:58,351
THEY CAN SEE IN AN FDA COMPLIANT

3114
01:50:58,418 --> 01:51:00,754
DATABASES, LIKE THROUGH A

3115
01:51:00,820 --> 01:51:00,987
SPONSOR.

3116
01:51:01,054 --> 01:51:03,156
I THINK TETRAIS GOING TO HELP

3117
01:51:03,223 --> 01:51:05,792
WITH THAT, BECAUSE WE'RE

3118
01:51:05,859 --> 01:51:07,727
RERUNNING ALL OF DAVID'S

3119
01:51:07,794 --> 01:51:10,363
VALIDATION ANALYSES IN THE

3120
01:51:10,430 --> 01:51:11,031
TETRA TRIAL.

3121
01:51:11,097 --> 01:51:12,799
GRANTED, IT'S NOT THE IDEAL

3122
01:51:12,866 --> 01:51:14,300
POPULATION BECAUSE IT'S THE

3123
01:51:14,367 --> 01:51:15,735
PLACEBO GROUP OR IT'S A GROUP

3124
01:51:15,802 --> 01:51:19,706
BEFORE THEY ACTUALLY START

3125
01:51:19,773 --> 01:51:21,107
TREATMENT, BUT IT'S KIND OF WHAT

3126
01:51:21,174 --> 01:51:22,842
THEY'RE GOING TO HAVE TO WORK

3127
01:51:22,909 --> 01:51:23,043
WITH.

3128
01:51:23,109 --> 01:51:24,277
SO I THINK IT'S JUST GOING ON

3129
01:51:24,344 --> 01:51:26,679
TAKE TIME FOR FDA TO ACCEPT IT.

3130
01:51:26,746 --> 01:51:27,781
BUT I DON'T KNOW IF ANYONE IS

3131
01:51:27,847 --> 01:51:30,750
FROM FDA-H BUT I WAS REALLY

3132
01:51:30,817 --> 01:51:32,619
HOPING FDA WOULD ATTEND THIS

3133
01:51:32,685 --> 01:51:34,254
MEETING BECAUSE THERE'S SO MUCH

3134
01:51:34,320 --> 01:51:35,321
WORK THAT'S BEEN DONE ON THIS,

3135
01:51:35,388 --> 01:51:37,590
AND WHEN WE FIRST WENT IN, YOU

3136
01:51:37,657 --> 01:51:38,958
KNOW, IT WAS ALMOST LIKE THEY

3137
01:51:39,025 --> 01:51:41,227
HADN'T HEARD OF IT, AND IT WAS

3138
01:51:41,294 --> 01:51:42,862
LIKE DAVID WAS AT THE MEETING

3139
01:51:42,929 --> 01:51:44,631
TOO, IT WAS LIKE A WHOLE NEW

3140
01:51:44,697 --> 01:51:44,864
CONCEPT.

3141
01:51:44,931 --> 01:51:46,266
AND I THINK IT'S REALLY

3142
01:51:46,332 --> 01:51:47,700
IMPORTANT FOR THEM TO START

3143
01:51:47,767 --> 01:51:58,044
LOOKING AT THIS.

3144
01:52:25,738 --> 01:52:27,207
>> ALL RIGHT TOVMENT REPEAT THAT

3145
01:52:27,273 --> 01:52:28,208
QUESTION FOR THE ONLINE PEOPLE,

3146
01:52:28,274 --> 01:52:30,043
ARE THERE ANY OTHER SORT OF

3147
01:52:30,110 --> 01:52:31,144
SYNDROMES THAT YOU WOULD LIKE TO

3148
01:52:31,211 --> 01:52:33,880
REPEAT THESE STUDIES ON IN THE

3149
01:52:33,947 --> 01:52:34,647
FUTURE?

3150
01:52:34,714 --> 01:52:36,416
>> I THINK FOR ME AND A LOT OF

3151
01:52:36,483 --> 01:52:38,585
US, IT DEPENDS A LOT ON THE

3152
01:52:38,651 --> 01:52:42,555
SUCCESS OF BABY TOOLBOX.

3153
01:52:42,622 --> 01:52:43,957
WHAT YOU CAN SEE FROM THE DATA

3154
01:52:44,023 --> 01:52:46,359
THAT I SHOWED, THAT THERE'S A

3155
01:52:46,426 --> 01:52:48,328
DROPOFF IN THE UTILITY OF THE

3156
01:52:48,394 --> 01:52:51,297
REGULAR TOOLBOX AT A CERTAIN

3157
01:52:51,364 --> 01:52:52,799
DEVELOPMENTAL LEVEL, AND WE NEED

3158
01:52:52,866 --> 01:52:54,567
THAT GAP TO BE FILLED WITH THE

3159
01:52:54,634 --> 01:52:56,970
BABY TOOLBOX TO ENABLE US TO

3160
01:52:57,036 --> 01:52:58,738
INCLUDE THESE OTHER SYNDROMES

3161
01:52:58,805 --> 01:53:01,341
THAT ARE MORE SEVERELY AFFECTED

3162
01:53:01,407 --> 01:53:03,643
THAN PEOPLE WITH DOWN'S

3163
01:53:03,710 --> 01:53:05,645
SYNDROME, NOT THAT PEOPLE WITH

3164
01:53:05,712 --> 01:53:07,614
FRAGILE-X AND DOWN'S SYNDROME

3165
01:53:07,680 --> 01:53:08,715
ARE NOT SOMETIMES SEVERELY

3166
01:53:08,781 --> 01:53:09,816
EFFECTED, BUT THERE ARE

3167
01:53:09,883 --> 01:53:10,783
SYNDROMES WHERE THE DELAY IS

3168
01:53:10,850 --> 01:53:12,785
EVEN MORE SIGNIFICANT, OR PEOPLE

3169
01:53:12,852 --> 01:53:15,054
WHO HAVE A REALLY COMMON

3170
01:53:15,121 --> 01:53:17,023
SYNDROME LIKE DOWN'S SYNDROME OR

3171
01:53:17,090 --> 01:53:19,225
EVEN JUST IDIOPATHIC

3172
01:53:19,292 --> 01:53:20,093
INTELLECTUAL DISABILITY WHO JUST

3173
01:53:20,160 --> 01:53:21,661
HAPPEN TO BE KIND OF BELOW THE

3174
01:53:21,728 --> 01:53:23,496
LEVEL OF THE REGULAR TOOLBOX.

3175
01:53:23,563 --> 01:53:25,431
SO WE REALLY, REALLY NEED THAT

3176
01:53:25,498 --> 01:53:26,232
BABY TOOLBOX.

3177
01:53:26,299 --> 01:53:28,001
THEN I THINK WE'LL BE ABLE TO

3178
01:53:28,067 --> 01:53:34,340
STUDY MORE BROADLY THESE OTHER

3179
01:53:34,407 --> 01:53:34,807
CONDITIONS.

3180
01:53:34,874 --> 01:53:36,176
>> (AWAY FROM MICROPHONE) WHAT

3181
01:53:36,242 --> 01:53:39,145
YOU SAID BECAUSE ESPECIALLY IN

3182
01:53:39,212 --> 01:53:42,549
RARE DISEASE, CHILDREN ARE BORN

3183
01:53:42,615 --> 01:53:43,850
WITH THOSE CONDITIONS, SO YOU

3184
01:53:43,917 --> 01:53:45,151
WON'T REALLY HAVE

3185
01:53:45,218 --> 01:53:46,486
INTERVENTIONS -- SO YOU WANT TO

3186
01:53:46,553 --> 01:53:48,354
HAVE INTERVENTIONS AS EARLY AS

3187
01:53:48,421 --> 01:53:48,821
POSSIBLE.

3188
01:53:48,888 --> 01:53:49,989
BUT WHEN YOU DON'T REALLY HAVE A

3189
01:53:50,056 --> 01:53:52,058
VALID TOOL TO UNDERSTAND THE

3190
01:53:52,125 --> 01:53:53,259
DEVELOPMENTAL DLAIF COGNITIVE

3191
01:53:53,326 --> 01:53:54,494
IMPAIRMENT, YOU CAN'T REALLY,

3192
01:53:54,561 --> 01:53:57,764
YOU KNOW, DO MUCH ABOUT IT.

3193
01:53:57,830 --> 01:54:00,166
SO ADVANCEMENT IN BABY TOOLBAR

3194
01:54:00,233 --> 01:54:02,235
AND KEEP ADVANCING THE NIH

3195
01:54:02,302 --> 01:54:04,103
TOOLBOX IS SUPER IMPORTANT.

3196
01:54:04,170 --> 01:54:06,406
I THINK FROM THE STUDY WE

3197
01:54:06,472 --> 01:54:07,373
CONDUCTED FROM THE

3198
01:54:07,440 --> 01:54:08,141
PHARMACEUTICAL INDUSTRY I THINK

3199
01:54:08,208 --> 01:54:09,576
THERE IS A LOT OF UTILITY IN

3200
01:54:09,642 --> 01:54:13,713
USING SORT OF A COMMON -- SUCH

3201
01:54:13,780 --> 01:54:16,583
AS NIH TOOLBOX USING IN

3202
01:54:16,649 --> 01:54:17,684
DIFFERENT DISEASE AND COMPARE

3203
01:54:17,750 --> 01:54:21,387
THE SCORE TO UNDERSTAND IN THIS

3204
01:54:21,454 --> 01:54:24,123
RARE DISEASE POPULATION OR IS IT

3205
01:54:24,190 --> 01:54:25,458
IN GENERAL, IMPAIRMENT.

3206
01:54:25,525 --> 01:54:27,093
>> I WILL BE THE THIRD TO ECHO

3207
01:54:27,160 --> 01:54:36,636
WHAT THEY ALREADY SAID.

3208
01:54:36,703 --> 01:54:47,146
>> (AWAY FROM MICROPHONE).

3209
01:55:53,513 --> 01:55:55,648
>> YEAH, AND RELATEDLY, A LOT OF

3210
01:55:55,715 --> 01:55:58,451
THE WORK THAT WE DO IN THE

3211
01:55:58,518 --> 01:56:00,320
NEURODEVELOPMENTAL AND

3212
01:56:00,386 --> 01:56:02,055
PHENOTYPING ON CAMPUS, I SAY WE,

3213
01:56:02,121 --> 01:56:03,690
IT'S NOT REALLY ME ANYMORE, BUT

3214
01:56:03,756 --> 01:56:05,591
IS WITH NONVERBAL OR PREVERBAL

3215
01:56:05,658 --> 01:56:06,993
POPULATIONS, SO AGAIN, THE BABY

3216
01:56:07,060 --> 01:56:08,328
TOOLBOX AND THOSE EYE TRACKING

3217
01:56:08,394 --> 01:56:09,996
MEASURES THEY REALLY CAN WORK IN

3218
01:56:10,063 --> 01:56:11,864
THESE POPULATIONS COULD BE

3219
01:56:11,931 --> 01:56:13,666
POTENTIALLY VERY VALUABLE.

3220
01:56:13,733 --> 01:56:15,468
>> CAN I ANSWER THIS QUESTION

3221
01:56:15,535 --> 01:56:16,336
TOO?

3222
01:56:16,402 --> 01:56:16,602
[LAUGHTER]

3223
01:56:16,669 --> 01:56:17,470
>> I WANT TO ANSWER THIS

3224
01:56:17,537 --> 01:56:20,506
QUESTION TOO.

3225
01:56:20,573 --> 01:56:21,708
I THINK ONE OF THE PLACES WHERE

3226
01:56:21,774 --> 01:56:24,010
I WANT TO SEE MORE POPULATIONS

3227
01:56:24,077 --> 01:56:25,311
THAT WE'RE WILLING TO TEST IS

3228
01:56:25,378 --> 01:56:26,279
SOME OF THE EXAMPLES WHERE WE

3229
01:56:26,346 --> 01:56:29,682
HAVE PRIMARILY MOTOR DISORDERS

3230
01:56:29,749 --> 01:56:31,684
AND WE'VE NEGLECTED COGNITION

3231
01:56:31,751 --> 01:56:33,019
FOR MAYBE TOO LONG WHERE IT'S

3232
01:56:33,086 --> 01:56:36,422
MORE OF A SUBTLE DEFICIT, SO WE

3233
01:56:36,489 --> 01:56:39,392
HEARD A LITTLE OF THAT, AND I

3234
01:56:39,459 --> 01:56:40,226
APPRECIATE THAT.

3235
01:56:40,293 --> 01:56:41,527
BUT I THINK THERE'S A LOT OF

3236
01:56:41,594 --> 01:56:42,762
DISORDERS WHERE WE MIGHT NOT

3237
01:56:42,829 --> 01:56:47,033
THINK OF THEM AS AFFECTING

3238
01:56:47,100 --> 01:56:47,300
COGNITION.

3239
01:56:47,367 --> 01:56:48,668
AND IT'S TIME HA WE SAY THIS IS

3240
01:56:48,735 --> 01:56:50,837
AN IMPORTANT THING FOR SAFETY

3241
01:56:50,903 --> 01:56:51,838
PURPOSES, IT'S AN IMPORTANT

3242
01:56:51,904 --> 01:56:53,806
THING BECAUSE WE'RE NOT

3243
01:56:53,873 --> 01:56:55,541
RECOGNIZING SUBTLE DEFICITS, AND

3244
01:56:55,608 --> 01:56:59,045
IF WE CAN DO A BETTER JOB WITH

3245
01:56:59,112 --> 01:57:02,115
THAT F WE STOP THINKING ABOUT

3246
01:57:02,181 --> 01:57:03,549
NEURO DEVELOPMENT AND BEING ONLY

3247
01:57:03,616 --> 01:57:04,884
ABOUT THOSE THAT ARE PRIMARILY

3248
01:57:04,951 --> 01:57:06,419
IN COGNITION, WE MITT REALIZE

3249
01:57:06,486 --> 01:57:09,355
SOME THINGS THAT WE'VE NEGLECTED

3250
01:57:09,422 --> 01:57:10,323
FOR TOO LONG.

3251
01:57:10,390 --> 01:57:12,525
>> OR THOSE DISORDERS THAT HAVE

3252
01:57:12,592 --> 01:57:14,360
BOTH MOTOR AND COGNITIVE

3253
01:57:14,427 --> 01:57:15,995
IMPAIRMENTS AND THE COGNITIVE

3254
01:57:16,062 --> 01:57:16,896
ASSESSMENT IS NOT ACCURATE

3255
01:57:16,963 --> 01:57:18,431
BECAUSE OF SOME OF THE MOTOR

3256
01:57:18,498 --> 01:57:18,664
SKILLS.

3257
01:57:18,731 --> 01:57:20,500
I THINK THERE'S A PLACE FOR

3258
01:57:20,566 --> 01:57:21,701
TOOLBOX HERE AS WELL.

3259
01:57:21,768 --> 01:57:24,103
SO WE HAVE A BUNCH OF THOSE

3260
01:57:24,170 --> 01:57:24,370
DISORDERS.

3261
01:57:24,437 --> 01:57:29,142
BUT I WANTED TO ASK YOU, SO IT'S

3262
01:57:29,208 --> 01:57:30,777
INTERESTING THIS PERCENTAGE OF

3263
01:57:30,843 --> 01:57:32,745
PATIENTS THAT FALLS IN THE,

3264
01:57:32,812 --> 01:57:33,946
QUOTE, SEVERE RANGE, WHICH IS

3265
01:57:34,013 --> 01:57:36,482
BASICALLY BELOW NORMAL AS TIME

3266
01:57:36,549 --> 01:57:37,250
GOES ON.

3267
01:57:37,316 --> 01:57:38,885
WE'VE NOTICED THIS ACTUALLY IN

3268
01:57:38,951 --> 01:57:41,521
OUR LONG-TERM FOLLOW-UP OF OUR

3269
01:57:41,587 --> 01:57:43,022
NIEMANN PIC PATIENTS AS WELL,

3270
01:57:43,089 --> 01:57:44,490
AND THEY HAVE DISEASE AND GET

3271
01:57:44,557 --> 01:57:45,992
THEM ON TREATMENT AT A CERTAIN

3272
01:57:46,058 --> 01:57:47,627
POINT, THEN WE KIND OF FREEZE

3273
01:57:47,693 --> 01:57:48,194
THE DISEASE.

3274
01:57:48,261 --> 01:57:49,495
BUT THEY'RE YOUNG, SO WE'RE NOT

3275
01:57:49,562 --> 01:57:51,030
REALLY TESTING EXECUTIVE

3276
01:57:51,097 --> 01:57:51,798
FUNCTION.

3277
01:57:51,864 --> 01:57:53,166
SO WHEN THEY HAVE AN EMERGING

3278
01:57:53,232 --> 01:57:54,367
PROBLEM WITH EXECUTIVE FUNCTION

3279
01:57:54,434 --> 01:57:56,402
OR SOMETHING, WE DON'T REALLY

3280
01:57:56,469 --> 01:57:59,372
KNOW WHETHER THAT IS THE

3281
01:57:59,439 --> 01:58:00,540
EMERGENCE OF THE DAMAGE THAT WAS

3282
01:58:00,606 --> 01:58:02,208
DONE BEFORE OR WHETHER THAT IS A

3283
01:58:02,275 --> 01:58:02,875
NEW DEFICIT.

3284
01:58:02,942 --> 01:58:07,213
DO YOU HAVE ANY THOUGHTS ON THAT

3285
01:58:07,280 --> 01:58:08,848
IN GALACTOSEMIA?

3286
01:58:08,915 --> 01:58:09,849
>> I THINK I DON'T HAVE A

3287
01:58:09,916 --> 01:58:11,284
DEFINITE ANSWER, BUT I'M

3288
01:58:11,350 --> 01:58:15,855
THINKING BECAUSE GALACTOSEMIA,

3289
01:58:15,922 --> 01:58:17,490
GALACTOTOL IS PRODUCED IN THOSE

3290
01:58:17,557 --> 01:58:18,724
CHILDREN, NORMAL CHILDREN DON'T

3291
01:58:18,791 --> 01:58:21,127
PRODUCE GALACTOTOL.

3292
01:58:21,194 --> 01:58:25,465
SO EVEN THOUGH THESE GALACTOSOAS

3293
01:58:25,531 --> 01:58:30,336
RESTRICT DIET THE GALACTOSOS

3294
01:58:30,403 --> 01:58:32,972
ACCUMULATE IN THE BODY, PRESUME

3295
01:58:33,039 --> 01:58:35,241
THAT ALREADY HAPPENED IN THE

3296
01:58:35,308 --> 01:58:37,677
PRENATAL PERIOD OF TIME,

3297
01:58:37,743 --> 01:58:38,311
POTENTIALLY WILL NOT RECOVER

3298
01:58:38,377 --> 01:58:40,613
FROM T BUT BECAUSE THE BODY

3299
01:58:40,680 --> 01:58:45,184
STILL PRODUCE GALACTOSSSO, CR

3300
01:58:45,251 --> 01:58:46,853
DAMAGE IS STILL GOING ON,

3301
01:58:46,919 --> 01:58:48,921
SOMETHING WE CAN FURTHER DECLINE

3302
01:58:48,988 --> 01:58:50,356
LACK OF FUNCTION COULD BE

3303
01:58:50,423 --> 01:58:51,524
BENEFICIAL BUT HOW MUCH WE CAN

3304
01:58:51,591 --> 01:58:53,960
DO THAT IS ALSO DEPENTDING ON

3305
01:58:54,026 --> 01:58:55,261
HOW MUCH MEASUREMENT WE CAN SEE

3306
01:58:55,328 --> 01:58:59,565
IS THERE A DECLINE S THE PLACEBO

3307
01:58:59,632 --> 01:59:00,132
POPULATION, HOW DOES THAT

3308
01:59:00,199 --> 01:59:03,369
COMPARE TO THE ACTIVE TREATMENT.

3309
01:59:03,436 --> 01:59:05,471
SO LINK THERE IS A LOT OF

3310
01:59:05,538 --> 01:59:07,139
UNKNOWN FOR RARE DISEASE BECAUSE

3311
01:59:07,206 --> 01:59:10,843
THERE IS JUST NOT BEING WELL

3312
01:59:10,910 --> 01:59:13,312
STUDIED.

3313
01:59:13,379 --> 01:59:14,013
>> ALREADY.

3314
01:59:14,080 --> 01:59:18,951
THAT.>> ALL RIGHT.

3315
01:59:19,018 --> 01:59:20,486
THAT WRAPS UP THIS.

3316
01:59:20,553 --> 01:59:22,855
THANK YOU VERY MUCH TO OUR

3317
01:59:22,922
SPEAKERS.