IACC Subcommittee for Basic and Translational Research Conference Call and Webinar - September 7, 2012
|Date:||Friday, September 7, 2012|
|Time:||10:00 a.m. to 2:00 p.m. Eastern|
|Agenda:||The subcommittee will discuss plans for developing a 2012 IACC Strategic Plan Progress Update that will describe recent progress that has been made in the autism field and identify remaining gap areas in research.|
|Place:||No in-person meeting; conference call and webinar only|
|Conference Call:||Dial: (800) 369-3130
Access code: 1524980
|Contact Person:||Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC, Room 6182A
Rockville, Maryland 20852
Phone: (301) 443-6040
|Please Note:||The meeting will be made available to the public via webinar and conference call. Members of the public who participate using the conference call phone number will be able to listen to the meeting but will not be heard. If you experience any technical problems with the conference call, please-e mail IACCTechSupport@acclaroresearch.com or call the IACC Technical Support Help Line at 443-680-0098.
If you experience any technical problems with the web presentation tool, please contact GoToWebinar at (800) 263-6317. To access the web presentation tool on the Internet the following computer capabilities are required: A) Internet Explorer 5.0 or later, Netscape Navigator 6.0 or later or Mozilla Firefox 1.0 or later; B) Windows 2000, XP Home, XP Pro, 2003 Server or Vista; C) Stable 56k, cable modem, ISDN, DSL or better Internet connection; D) Minimum of Pentium 400 with 256 MB of RAM (Recommended); E) Java Virtual Machine enabled (Recommended).
Schedule subject to change.
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The materials for the meeting can be found here.
|10:00 a.m.||Roll Call and Opening Remarks
Thomas Insel, M.D.
Director, National Institute of Mental Health
Chair, IACC and Co-Chair, Subcommittee for Basic and Translational Research
Geraldine Dawson, Ph.D.
Chief Science Officer, Autism Speaks
Co-Chair, Subcommittee for Basic and Translational Research
|10:15 a.m.||Overview and Discussion of Process to Update the Strategic Plan|
|10:45 a.m.||Workshop Planning
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- Roll Call and Opening Remarks
- Overview and Discussion of Process for Updating the Strategic Plan
- Review of the Slate of External Experts
- Additional Discussion
- Wrap-Up and Next Steps
The Interagency Autism Coordinating Committee (IACC) Subcommittee for Basic and Translational Research (also referred to as "the Subcommittee") convened a conference call on Friday, September 7, 2012, from 10:02 a.m. to 11:48 a.m.
In accordance with Public Law 92-463, the meeting was open to the public. Thomas Insel, M.D., and Geraldine Dawson, Ph.D., Co-Chairs, presided.
Thomas Insel, M.D., Co-Chair, National Institute of Mental Health (NIMH); Gemma Weiblinger, Designated Federal Official, National Institute of Mental Health (NIMH); Geraldine Dawson, Ph.D., Co-Chair, Autism Speaks; Anshu Batra, M.D., Our Special Kids; Linda Birnbaum, Ph.D., National Institute of Environmental Health Sciences (NIEHS); Coleen Boyle, Ph.D., Centers for Disease Control and Prevention (CDC); Josephine Briggs, M.D., National Center for Complementary and Alternative Medicine (NCCAM) (representing Francis Collins, M.D.); Noah Britton, M.A., Bunker Hill Community College; Matthew Carey, Ph.D., Left Brain Right Brain Blog; Dennis W. Choi, M.D., Ph.D., Simons Foundation; Tiffany Farchione, M.D., U.S. Food and Drug Administration (FDA); Alice Kau, Ph.D., Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) (representing Alan Guttmacher, M.D.); Donna Kimbark, Ph.D., Department of Defense (DoD); Walter Koroshetz, M.D., National Institute of Neurological Disorder and Stroke (NINDS); Cindy Lawler, Ph.D., National Institute of Environmental Health Sciences (NIEHS) (representing Linda Birnbaum, Ph.D.); Lyn Redwood, R.N., M.S.N., Coalition for SafeMinds; John Elder Robison, Self-Advocate, Parent, and Author; Alison Tepper Singer, M.B.A., Autism Science Foundation (ASF)
Roll Call and Opening Remarks
Dr. Thomas Insel welcomed participants and called roll.
Overview and Discussion of Process for Updating the Strategic Plan
Dr. Insel reviewed the process to update the Strategic Plan. The aim of the update was to the identify research and funding gaps. Dr. Insel commented that it would not be an extensive or comprehensive review, but rather a broad overview of autism research. He said that they would not be updating the research opportunities and short-term objectives in this update. The focus would be on updating the science, and emphasizing gaps the Strategic Plan that had not yet been addressed by science. Members could draw upon a review of the literature since the previous update, the Portfolio Analysis, the Summary of Advances, and the insights of the external experts. This update would cover the past 18 months.
Dr. Geraldine Dawson said that biggest challenge would be gathering funding information, particularly for privately funded research. She noted that NIH Centers of Excellence grants were a good example of a large infusion of money that already was beginning to fill some gaps. Ms. Lyn Redwood asked if the Office of Autism Research Coordination (OARC) could provide a cumulative funding document based on the data from the Portfolio Analysis. Dr. Insel said that OARC would work with the Subcommittee.
The discussion focused on the mechanics of developing the update/addendum. The Committee agreed to leave the 2011 addendum as it was, and to write a new update for 2012. In terms of the timeline, once the Working Groups were finalized for the five chapters, the Groups would begin to contact the experts, and work on the draft. The chapter drafts would be presented during the full IACC workshop on October 30, 2012, and the entire Committee could provide feedback.
Review of the Slate of External Experts
Dr. Insel suggested reviewing the names/nominations of the external experts. He said that in cases where most of the Committee members had endorsed the same people, those individuals have been invited. However, some of the experts had indicated that they were not able to attend because of prior commitments.
For Question 1, Dr. Catherine Lord and Dr. Ami Klin had agreed to participate. Dr. Karen Pierce was not available, leaving one additional spot to fill, with no consensus at this time on who should fill it. Subcommittee membersagreed that it would be helpful to have a pediatrician or a neurologist who could address medical aspects. Dr. Insel summarized the choices discussed by the Subcommittee for the third position, which included Dr. Audrey Griesbach, a developmental and behavioral pediatrician in Los Angeles; Dr. Daniel Coury, a developmental pediatrician and the medical director for the Autism Treatment Network (ATN); Dr. Ricki Robinson, a developmental pediatrician; and Dr. Susan Hyman, who represented the American Academy of Pediatrics (AAP) and its subcommittee on autism. Mr. John Elder Robison volunteered to chair this Working Group. Dr. Coleen Boyle and Dr. Alice Kau volunteered to help.
Dr. Insel said that for Question 2, Dr. David Amaral and Dr. Kevin Pelphrey had agreed to participate. Dr. Carlos Pardo-Villamizar had received multiple votes from the Committee for the third position and might be available. Dr. Insel said that Dr. Pardo-Villamizar has been invited. He is a neurologist at Johns Hopkins and a pioneer on the inflammatory and neural immune aspects of autism. If he is able to accept, the group will be complete. Dr. Dawson said that they should choose an alternate, if Dr. Pardo-Villamizar was not able to accept. A number of names were discussed, including Dr. Mustafa Sahin, Dr. Pat Levitt, and Dr. Martha Herbert. Dr. Insel noted that Dr. Walter Koroshetz would chair this Working Group, with the help of Dr. Dennis Choi and Ms. Alison Tepper Singer.
Dr. Insel said that Dr. Isaac Pessah, Dr. Matthew State, and Dr. Craig Newschaffer had all agreed to participate as external experts for Question 3. Ms. Redwood would chair the Working Group. Other members included Dr. Matthew Carey, and Dr. Linda Birnbaum/Dr. Cindy Lawler.
Dr. Insel said that Dr. Connie Kasari and Dr. Linmarie Sikich had agreed to participate as part of the Question 4 Working Group. Dr. Kasari is a psychologist at UCLA, who does a broad range of early behavioral research, and Dr. Sikich is a child psychiatrist at the University of North Carolina at Chapel Hill who has participated in a wide range of pharmacological clinical trials.
In terms of a third expert, Dr. Dawson suggested that they could invite someone with a molecular view drug development or someone with a lifespan perspective with knowledge of interventions for older children. Dr. Boyle agreed with the suggestion about the lifespan approach and commented that trying to get someone with expertise in that area might be helpful.
Dr. Dawson said that Dr. Jeffrey Wood has spearheaded the adaptation of cognitive behavioral interventions for autism and has run a number of randomized clinical trials now showing their efficacy and is moving into adapting those cognitive behavioral interventions to address core symptoms. Dr. Wood has been using some new technologies in his outcome measures and would be aware of the literature on developing social networks on the internet and using the internet to build in both a therapeutic and a social networking context for higher functioning individuals.
Mr. Robison said that he nominated Dr. Matthew Goodwin. Dr. Dawson agreed that he would be a good candidate who is more focused on physiological assessments and who could help in understanding the biology and phenomenology of autism and arousal.
It was noted that based on some of the work of the ATN, 65 percent of individuals with ASD have sleep disturbances. There also is a high rate of seizures and gastrointestinal (GI) problems among people with ASD. However, they did not have an expert who could address these kinds of medical comorbidities. Dr. Dawson said that Dr. Beth Malow might be a good choice. Although her focus is primarily on sleep, Dr. Malow is a child neurologist and has researched epilepsy and knows that literature well. She also is aware of research in the GI area because she is part of the ATN.
Dr. Dawson said that Dr. Matthew Lerner – assistant professor at the University of Virginia – develops clinical interventions for children and adolescents, and is interested in improving quality of life measures. Mr. Noah Britton noted that Dr. Lerner works with older children and has a wide breadth of knowledge in terms of intervention research.
Dr. Dawson summarized that there were three areas for which expertise was needed. One was medical comorbidities, another was the use of technology, and the third was the development of lifespan programs to serve older and higher-functioning individuals. It was also suggested that the Committee should consider including an expert on lower-level sensory motor neural systems. It was noted that because Dr. Goodwin was also interested in sensory motor issues, he might be able to address that technology and the sensory motor perspective.
Dr. Insel commented that it appeared as though they might need four experts instead of three for this question. Dr. Goodwin could address new technologies, Dr. Wood could address other kinds of interventions for older adults, and Dr. Lerner could address older children. Dr. Anshu Batra and Mr. Britton agreed to act as co-chairs of this Working Group. Other members included, with help from Dr. Tiffany Farchione.
Dr. Insel said that three experts had agreed to participate in the Question 7 Working Group (infrastructure): Dr. Roger Little, Dr. Catherine Rice, and Mr. Dan Hall. Dr. Little is involved with the development of the NIH Biobank; Dr. Rice is a behavioral scientist with the Prevention Research Branch at CDC (epidemiology); and Mr. Hall is the manager of the National Database for Autism Research (NDAR). Question 7 Working Group members include Dr. Donna Kimbark, Dr. Dawson, and Dr. Insel. Ms. Singer volunteered to participate in this group if needed. Dr. Kimbark would chair the Group.
Ms. Redwood asked how the needs of the community could be addressed during the update process. Dr. Insel said that one way would be through the Subcommittee members because each of them represents a diverse part of the community. The other way, he said, would be to use public comments. He encouraged members to reach out to the community for ideas, especially about findings that may be important.
Dr. Dawson said that last year Autism Speaks used a web-based mechanism through which people had had the opportunity to submit ideas for funding and how funding for research should be directed. Thousands of people were involved in submitting and voting on ideas, and it had been very informative to see what people viewed as important funding areas. Dr. Insel said that most of the work on the update would happen between this meeting and October 22nd. Then the Subcommittee would meet, and the experts would discuss the drafts on October 30th.
Dr. Insel noted that a paper1 had come out the previous evening in Science, in which researchers had attempted to evaluate what is known about the biology of autism, and what research is still needed. He said that this article was a good example of the kind of evidence needed for the update process.
Subcommittee members discussed how to handle possible biases and/or conflicts of interest that external experts may have. Ms. Redwood noted that Committee members fill out extensive disclosures in regard to conflict or potential conflict of interest. Dr. Insel said that because external consultants are not special government employees, they would not have to make any disclosures. He indicated that if anyone had any concerns about any individual or a particular conflict of interest, he or she should let the Working Group chairs or OARC staff know. Dr. Dawson said that it was important to give strong instructions to the external experts regarding conflict of interest. Ms. Redwood said that as part of the external experts' introduction, they could share their active projects with the Committee. Dr. Insel said that ultimately the Committee is responsible for the contents of the document.
Wrap-Up and Next Steps
Dr. Insel thanked everyone for their participation. He said that chapter drafts were due on October 22nd.
The conference call was adjourned at 11:48 a.m.
These minutes of the IACC Subcommittee were approved by the Subcommittee.
I hereby certify that this meeting summary is accurate and complete.
Thomas Insel, M.D.
Basic and Translational Research Subcommittee Co-Chair
Geraldine Dawson, Ph.D.
Basic and Translational Research Subcommittee Co-Chair
1 State MW, Šestan N. Neuroscience. The emerging biology of autism spectrum disorders. Science. 2012 Sep 14;337(6100):1301-3. [PMID: 22984058]
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- 2011 IACC Strategic Plan for Autism Spectrum Disorder Research
- 2010 ASD Research Portfolio Analysis Report
- 2011 Summary of Advances in Autism Spectrum Disorder Research
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- Meeting Transcript (PDF - 174 KB)
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- IACC Meeting Full Slide Set (PDF – 90 KB)