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Executive Session 1 U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES INTERAGENCY AUTISM COORDINATING COMMITTEE FULL COMMITTEE MEETING TUESDAY, JANUARY 12, 2016 The full Interagency Autism Coordinating Committee (IACC) convened in Bethesda, Maryland, at the National Institutes of Health (NIH), Building 31, C Wing, 6th Floor, 31 Center Drive, Conference Room 6, at 9:02 a.m., Bruce Cuthbert, Ph.D., Chair, presiding. PARTICIPANTS: BRUCE CUTHBERT, Ph.D., Chair, IACC, National Institute of Mental Health (NIMH) SUSAN DANIELS, Ph.D., Executive Secretary, IACC, Office of Autism Research Coordination (OARC), NIMH DAVID AMARAL, Ph.D., University of California (UC), Davis MIND Institute JAMES BATTEY, M.D., Ph.D., National Institute on Deafness and Other Communications Disorders (NIDCD) LINDA BIRNBAUM, Ph.D., D.A.B.T., A.T.S., National Institute of Environmental Health Sciences (NIEHS) AARON BISHOP, M.S.S.W., Administration for Community Living (ACL) DEBORAH CHRISTENSEN, Ph.D., Centers for Disease Control and Prevention (CDC) (representing Cynthia Moore, M.D.,Ph.D.) SAMANTHA CRANE, J.D., Autistic Self-Advocacy Network (ASAN) 2 PARTICIPANTS (continued): GERALDINE DAWSON, Ph.D., Duke University RUTH ETZEL, M.D., Ph.D., Environmental Protection Agency (EPA) TIFFANY FARCHIONE, M.D., U.S. Food and Drug Administration (FDA) AMY GOODMAN, M.A., Autism Now Center MELISSA HARRIS, Centers for Medicare and Medicaid Services (CMS) SHANNON HAWORTH, M.A., Association of University Centers on Disabilities (AUCD) ELISABETH KATO, M.D., M.R.P., Agency for Healthcare Research and Quality (AHRQ) LAURA KAVANAUGH, M.P.P., Health Resources and Services Administration (HRSA) WALTER KOROSHETZ, M.D., National Institute of Neurological Disorders and Stroke (NINDS) DAVID MANDELL, Sc.D., University of Pennsylvania BRIAN PARNELL, M.S.W., C.S.W, Utah Department of Human Services (attended by phone) KEVIN PELPHREY, Ph.D., Yale University EDLYN PENA, Ph.D., California Lutheran University LOUIS REICHARDT, Ph.D., Simons Foundation Autism Research Initiative ROBERT RING, Ph.D., Autism Speaks JOHN ELDER ROBISON, College of William and Mary ALISON TEPPER SINGER, M.B.A., Autism Science Foundation (ASF) 3 PARTICIPANTS (continued): CATHERINE SPONG, M.D., Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) JULIE LOUNDS TAYLOR, Ph.D., Vanderbilt University LARRY WEXLER, Ed.D., Department of Education NICOLE WILLIAMS, Ph.D., Department of Defense (DoD) (attended by phone) 4 TABLE OF CONTENTS Welcome, Introductions, Roll Call, and Approval of Minutes .............................. 5 Research Domain Criteria (RDoC): An Overview .... 13 The Autism Biomarkers Consortium for Clinical Trials .......................................... 49 National-Level Outcomes of Transition-Age Youth on the Autism Spectrum .................... 80 Committee Business ............................. 118 Oral Public Comment Session .................... 173 IACC Committee Member Discussion of Public Comments ....................................... 229 Autism Screening Panel David Grossman, M.D., M.P.H. .............. 242 Daniel L. Coury, M.D. ..................... 256 Diana L. Robins, Ph.D. .................... 261 Karen Pierce, Ph.D. ....................... 270 Amy M. Wetherby, Ph.D. .................... 283 Closing Remarks ................................ 337 Adjournment .................................... 339 5 PROCEEDINGS: Operator: You may begin any time. Dr. Bruce Cuthbert: And so we shall. Good morning, everyone. Welcome to the first meeting for 2016 of the IACC. Happy New Year to all of you. This should be a very productive and engaging meeting. As you can see, we have a very full agenda today, and so I think we'll look forward to a lot of very good discussion and debate. My name is Bruce Cuthbert. I'm the Acting Director of the National Institute of Mental Health and chair of this Committee. And I'm very pleased that we have several other people from other institutes and centers here as well to contribute to the discussions. I appreciate that very much. So to go forward, as you can see, our first act of business is simply to get the roll called. So I will turn that over to the head of our Autism Office at NIMH, Dr. Susan Daniels, who has done the vast amount of the share of work in preparing for this meeting, and I want to express my gratitude and appreciation to her at the outset for all of her hard work in organizing this 6 meeting, as with all the activities of the IACC. So, Susan, good morning. Dr. Susan Daniels: Thank you, Bruce. So I'd like to take a roll call to see who all is here. I'll start with folks on the phone. Is there anybody on the phone at this moment that we need to acknowledge? Dr. Nicole Williams: [on telephone] Yeah, Nicole Williams with CDMRP. Dr. Daniels: Hello, Nicole. Dr. Williams: Hi. Dr. Daniels: And I will come back to phone folks after we go through the list. So, Bruce Cuthbert? Dr. Cuthbert: Here. Dr. Daniels: Jim Battey? Dr. James Battey: Yes. Dr. Daniels: Linda Birnbaum? Dr. Linda Birnbaum: Here. Dr. Daniels: Aaron Bishop or Jennifer Johnson? Mr. Aaron Bishop: [Off-mike response.] Dr. Daniels: Josie Briggs or Francis Collins? I don't think so. [No response.] Dr. Daniels: Ruth Etzel? 7 Dr. Ruth Etzel: Here. Dr. Daniels: Hi. Welcome, Ruth, for your first meeting. Tiffany Farchione? [No response.] Dr. Daniels: Melissa Harris? [No response.] Dr. Daniels: Elisabeth Kato? Dr. Elisabeth Kato: Here. Dr. Daniels: Hi. Laura Kavanagh? Ms. Laura Kavanagh: Here. Dr. Daniels: Walter Koroshetz, who will be next to me when he arrives. Cynthia Moore -- or Daisy, yes? Dr. Deborah Christensen: Daisy. Dr. Daniels: Daisy Christensen. Welcome to your first meeting also. Linda Smith? [No response.] Dr. Daniels: Cathy Spong? Dr. Catherine Spong: Here. Dr. Daniels: Welcome. Larry Wexler? Dr. Larry Wexler: Here. Dr. Daniels: And then we will go to our public members. David Amaral? 8 Dr. David Amaral: [Off-mike response.] Dr. Daniels: Jim Ball is supposed to be joining by phone. Are you on, Jim? [No response.] Dr. Daniels: Yeah, he'll be on the phone. Samantha Crane? Ms. Samantha Crane: [Off-mike response.] Dr. Daniels: Geri Dawson? Dr. Geraldine Dawson: Here. Dr. Daniels: Amy Goodman? Ms. Amy Goodman: Here. Dr. Daniels: Shannon Haworth? Ms. Shannon Haworth: Here. Dr. Daniels: David Mandell? Dr. David Mandell: Here. Dr. Daniels: Brian Parnell, are you on the phone? [No response.] Dr. Daniels: Kevin Pelphrey? Dr. Kevin Pelphrey: Here. Dr. Daniels: Edlyn Pena? Dr. Edlyn Pena: Here. Dr. Daniels: Louis Reichardt? Dr. Louis Reichardt: Present. Dr. Daniels: Rob Ring? 9 Dr. Robert Ring: Here. Dr. Daniels: John Robison? Mr. John Robison: [Off-mike response.] Dr. Daniels: Alison Singer? Ms. Alison Singer: Here. Dr. Daniels: And Julie Taylor? Dr. Julie Taylor: Here. Dr. Daniels: And have I missed anyone off this list? [No response.] Dr. Daniels: All right. So the roll has been taken. Dr. Cuthbert: Thank you. Susan, do you have any other business? I think we need to approve the minutes from the last meeting. Dr. Daniels: Yes. So if you turn your attention to the draft minutes that were distributed to the Committee, does anyone have any corrections or comments that need to be incorporated into these minutes before we can approve them? [No response.] Dr. Daniels: Hearing none, is there a motion on the floor to accept the minutes? 10 Dr. Battey: So moved. Dr. Daniels: Second? Ms. Kavanagh: Second. Dr. Daniels: All in favor of approving the minutes? [Show of hands.] Dr. Daniels: Anyone opposed? [No response.] Dr. Daniels: And anyone abstaining? [No response.] Dr. Daniels: So the minutes are approved and will be posted to the IACC Web site as soon as possible after the meeting. Thank you. Dr. Cuthbert: Okay. Speaking of microphones on, when you use the microphones; be sure to remember to press the button. The red light will light up. For those of you who have been in this room before, you know that there are only so many red lights that can be on before nobody can get through. So also please remember to turn the red light off after you've finished speaking so that others can use the microphone system. Thanks. 11 So, thank you. Josh, if you want to move -- advance our slides, please? We have a quite a large number of science updates today. So we might as well jump right in and use that time to make sure that we can go through these and answer any questions that people have. Okay. I think I have the slides here. Something -- there should be some slides about the actual -- you know, the PowerPoint with the updates themselves for people. Maybe we're running through the agenda, yeah. Dr. Daniels: Is there something there? Dr. Cuthbert: Maybe it goes on through? Perhaps this is just a review of the agenda. Okay. I obviously haven't seen this slide set beforehand. So we will have a presentation on the Autism Biomarkers Consortium. You can see we'll have a presentation by Dr. Anne Roux about transition-age youth on the autism spectrum, which is a very obviously important and timely topic that is receiving increasing attention as we continue to rapidly expand our ideas about autism from simply a disorder of young children to a lifespan disorder with its attendant needs, talking about 12 national-level outcomes. Actually looks like we've gotten into Dr. Drexel's talk. So -- Female Speaker: Sorry about that. They're in the wrong order. Dr. Cuthbert: Yeah, Dr. McPartland is here. So -- Dr. Daniels: We'll have to load them. Dr. Cuthbert: So we'll have to get those loaded, which takes a while on this -- okay. [Pause.] Dr. Cuthbert: For those of you on the phone, we're just trying to see if we can get the slides up for the science updates or if we should move on to Dr. McPartland's presentation next. [Pause.] Dr.
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