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Minutes of the Interagency Autism Coordinating Committee (IACC) Subcommittee for Planning the Annual Strategic Plan Updating Process Conference Call and Webinar on September 21, 2010

Subcommittee Members and OARC Staff Participating in the Teleconference:

Thomas R. Insel, M.D., IACC Chair, National Institute of Mental Health (NIMH); Della Hann, Ph.D., Executive Secretary, Office of Autism Research Coordination (OARC), NIMH; Susan Daniels, Ph.D., Office of Autism Research Coordination (OARC), NIMH; Geraldine Dawson, Ph.D., Autism Speaks; Lee Grossman, Autism Society; Jennifer Johnson, Ed.D., Administration for Children and Families; Walter Koroshetz, M.D., National Institute of Neurological Disorders and Stroke (NINDS); Ari Ne'eman, Autistic Self Advocacy Network; Lyn Redwood, R.N., M.S.N., Coalition of SafeMinds; Cathy Rice, Ph.D. (representing Coleen Boyle, Ph.D.), Centers for Disease Control and Prevention (CDC); Alison Singer, M.B.A., Autism Science Foundation; Stephen M. Shore, Ed.D., Autism Spectrum Consulting; Marjorie Solomon, Ph.D., M.B.A., University of California, Davis

Welcome and Approval of the April 19, 2010 Minutes

The Planning Subcommittee met on September 21, 2010 to discuss the procedures for the 2011 Strategic Plan update. Dr. Insel conducted roll call and the subcommittee approved the minutes of the April 19, 2010 meeting. Minutes of the most recent Planning Subcommittee meeting, which took place on June 18, 2010, were previously approved via e-mail and posted on the IACC web site.

Discussion of the Process for Updating the Strategic Plan

Dr. Insel then reviewed prior discussion about the methodology for the Plan update. In past meetings, the committee had agreed that updates to the objectives of the 2011 Plan should be based on major new scientific discoveries and that the focus should be on gauging progress on the implementation of the Plan. Major revisions to the Plan during this update would limit the ability to track progress over time. The committee also agreed that progress on the Plan would be measured primarily using the Portfolio Analysis of ASD Research in 2009 (the most recent year for which funding data is available). To update the "What do we know?" sections of each question, the committee selected articles to include in a mid-year installment of the Summary of Advances.

The committee will be provided with the following documents to inform the Plan update: 2009 IACC Portfolio Analysis, the mid-year installment of the 2010 Summary of Advances, the public comments received in response to the 2010 Request for Information on the Strategic Plan, and an index of public comments received throughout the year. A November workshop focused on services policy needs and issues will also serve as a source of information for the update.

Dr. Dawson noted that information discussed at scientific and policy meetings external to the IACC could also be helpful during the update. She said that she had been impressed by the innovative technologies, informatics strategies, and statistical approaches that were discussed at the National Institute of Environmental Health Sciences (NIEHS) meeting on autism and the environment, held September 8, 2010.1 A representative from NIEHS will provide the IACC with an update when the next IACC full committee meeting on October 22, 2010. She also mentioned a meeting that Dr. Alan Guttmacher attended in Toronto on the translation of genetic research into diagnostic advances as a potential resource for the Plan update.

Dr. Insel asked if the IACC could be updated on this event during their next meeting and Dr. Dawson said that she or Dr. Steve Scherer could present. Mr. Ne'eman also noted that the recent meeting held by the Eunice Kennedy Shriver National Institute on Child Health and Human Development (NICHD) on disparities in ASD diagnosis could be a useful resource.2 The subcommittee was informed that Dr. Alice Kau would provide the committee with an update about the disparities conference at the next IACC meeting. Dr. Insel said that it would be useful to have her comment specifically on perceived gaps in the Plan based on information from the conference.

Returning to a more general discussion of the Plan update, Mr. Ne'eman said that it was his understanding that the update would include substantial additions to the services section. Dr. Insel discussed moving beyond the research strategic plan to create an aggressive action agenda specifically for services, fulfilling other mandates of the Combating Autism Act. Mr. Ne'eman noted that the November services workshop would produce a set of policy recommendations but that these must be complemented by high-quality services research outlined in the Strategic Plan. Dr. Insel said that it would be important to understand what services research is currently being conducted in order to identify gaps. He then discussed the meeting recently hosted by the Simons Foundation Autism Research Initiative (SFARI) in Washington, D.C., on September 12-14, 2010. He said that the core of their current work focused on finding a genetic signal in simplex families (those where only one family member is affected by autism), but that they were also supporting work that related to many aspects of the IACC Strategic Plan.

Dr. Della Hann informed the subcommittee that she had previously sent the responses from the summer RFI and a document with the abstracts from the 34 articles nominated for the mid-year installment of the Summary of Advances. She said that the 2009 Portfolio Analysis was almost complete and would be distributed in the coming days, along with the index of 2010 public comment. The meeting summaries would be heard at the October IACC meeting.

She then described the process that had been used in the past for the Plan update, to be completed in January. For the 2010 update, the subcommittee had assigned pairs of subcommittee members to identify and develop recommended revisions that were then presented to the full IACC for consideration and approval. Dr. Insel asked the subcommittee if they would prefer to volunteer or be assigned to work on one of the eight sections of the Plan (seven chapters plus introduction). Dr. Rice noted that during the previous update the subcommittee members had worked on the update in conjunction with a panel of outside experts. She asked if they would be working alone or with input from the rest of the committee. Dr. Insel said that the recommendations would come solely from the subcommittee members assigned to the chapter. Dr. Walter Koroshetz recommended developing a template for the update to create continuity within the report. He asked if they would receive a list of projects funded by the Simons foundation and was told that this would be part of the forthcoming portfolio analysis. The subcommittee then discussed the need to identify pieces of the Plan that had been completed or were close to completion so they could be removed.

Ms. Lyn Redwood said that it would be important for all subcommittee members to have a chance to review the proposed updates to the entire Plan before it was presented to the full committee. Dr. Insel said that they would convene on October 6 for this purpose. Dr. Hann told the subcommittee that they would be sent Word versions of each chapter so that they could track their changes. The subcommittee also decided to add a one-paragraph section to each chapter on the progress implementing the objectives. Dr. Dawson said that this should identify completed projects and the overall funding for the objectives. Dr. Hann said that the portfolio analysis would provide a tabular way of identifying this.

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Question Assignments

The subcommittee then decided who would work on each chapter. A list of the final assignments is included below:

Introduction: Lyn Redwood, Tom Insel, Alison Singer

Question 1: Coleen Boyle/Cathy Rice, Walter Koroshetz, Jennifer Johnson

Question 2: Alison Singer, Walter Koroshetz, Marjorie Solomon, Lyn Redwood

Question 3: Lee Grossman, Walter Koroshetz, Lyn Redwood, Tom Insel

Question 4: Geri Dawson, Stephen Shore, Lee Grossman, Ari Ne'eman, Lyn Redwood

Question 5: Ari Ne'eman, Lee Grossman, Ellen Blackwell

Question 6: Ari Ne'eman, Ellen Blackwell, Marjorie Solomon

Question 7: Alison Singer, Coleen Boyle/Cathy Rice, Geri Dawson

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Discussion of Action Items and Adjournment

Dr. Hann told the group that she would send out the final list of assignments, as well as the Word versions of each chapter, the 2009 Portfolio analysis, mid-year Summary of Advances, RFI responses, index of public comments, and a template of questions to consider while updating the chapter. They would then meet on October 6 from 9 a.m. – 12:00 p.m. to discuss the proposed edits. Dr. Hann said that anyone who could attend in person was encouraged to do so because in the past it had proven useful to be able to interact in-person during the process. She reminded the subcommittee that the meeting would be public.

Dr. Hann suggested that the members provide their proposed edits two days before the meeting to allow the other members to review it. Dr. Dawson asked if a leader would be assigned to each group and Dr. Insel said that one would be selected. Dr. Hann requested that the members include her or Dr. Daniels on any teleconferences or emails to comply with regulations under the Federal Advisory Committee Act (FACA).

Dr. Rice noted that in order to meet the deadline they would have to complete their review within a week. Dr. Insel said that the October 6 meeting could be used as a working meeting to refine their recommendations. Dr. Hann noted that the subcommittee members could also choose to review the chapters separately and bring their individual recommendations to the meeting to reduce time constraints. She told the subcommittee that the Office of Autism Research Coordination could set up any desired conference calls and the meeting was then adjourned.

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Certification

These minutes of the IACC Subcommittee for Planning the Annual Strategic Plan Updating Process were approved by the subcommittee on October 6, 2010.

I hereby certify that this meeting summary is accurate and complete.

/Thomas Insel/
Thomas Insel, M.D.
Chair, Interagency Autism Coordinating Committee

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References

1 NIEHS Autism and the Environment meeting

2 NICHD ASD and Disparities in Diagnosis meeting

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