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July 15, 2009 IACC Meeting Summary

July 23, 2009

The Interagency Autism Coordinating Committee (IACC) met on Wednesday, July 15, at the Ronald Reagan Building, in Washington, D.C.

The meeting included a briefing from the National Vaccine Advisory Committee (NVAC) Vaccine Safety Working Group on its recent activities and future direction. The Working Group was established in 2008 and given two charges: 1) review the draft Immunization Safety Office (ISO) Scientific Agenda and 2) review the current federal vaccine safety system and develop a White Paper describing the infrastructure necessary for this system. After a series of public meetings and outreach activities to gain input from stakeholders, including the general public, the Working Group issued a draft report on the recommendations to the ISO Scientific Agenda in April, 2009. The report concluded that there is a strong need for a federal vaccine safety research agenda that encompasses research undertaken by non-ISO CDC offices, FDA, and NIH and that requires increased collaboration and coordination between all federal agencies with a stake in vaccine safety. The report also included a recommendation for an external expert committee, such as the Institute of Medicine, with broad methodological, design, and ethical expertise to consider “strengths and weaknesses, ethical issues and feasibility including timelines and cost of various study designs to examine outcomes in unvaccinated, vaccine delayed and vaccinated children and report back to the NVAC.”

Members of the NVAC Vaccine Safety Working Group then joined the IACC for a discussion of the feasibility of a large study on outcomes in unvaccinated, vaccine delayed and vaccinated children. The feasibility and design issues identified included the view that the National Children's Study (NCS) is not able to look at subgroups or physician immunization records to the extent needed for this research. The joint discussion also covered ethical and epidemiological challenges to securing randomized sampling for these populations. The IACC concluded that NIH should consider issuing an RFA to address the feasibility issues in advance of the NVAC's recommendations being implemented by the IOM or some other entity.

Autism Speaks Research

During the public comments period of this session, Autism Speaks Chief Science Officer Geri Dawson, Ph.D., detailed some of the organization's research activities on risk factors for autism. Dr. Dawson commented on the IACC's discussion regarding the feasibility of using the NCS as a platform for studying vaccines as a risk factor for ASD. She explained that Autism Speaks is leading an expert panel that is advising the NCS regarding how to best leverage the NCS to study risk factors for autism. She noted that one of the limitations of the current design of the study is that medical records are not collected. This precludes studying a wide range of risk factors, including vaccines. She recommended that supplementary funding be provided to the study so that these additional risk factors can be studied. Dr. Dawson also commented that although Autism Speaks is currently funding research on vaccines and autism, it remains only a small part of Autism Speaks' overall research portfolio – about 2% of Autism Speaks' research funding. She explained that the research funded by Autism Speaks focuses on identifying subgroups of children with specific medical or genetic conditions who might be susceptible to adverse effects of vaccines, including autism. She recommended that the NCS, which is a large population-based study, is much better suited to address questions regarding autism and vaccines than the smaller studies that Autism Speaks has funded. Dr. Dawson also noted that Autism Speaks' expert panel that is advising the NCS is making recommendations regarding the ethical issues involved in studying autism in the context of the NCS. Issues that are being considered include what referrals and monitoring should occur when children at risk for ASD are detected, and issues related to risk communication, such as how to insure that raising questions about environmental risk factors, such as vaccines, doesn't alarm parents or discourage them from getting their child vaccinated.

Autism Centers of Excellence

Following the discussion with NVAC, the IACC heard presentations on the NIH Autism Centers of Excellence (ACE) and the National Database for Autism Research (NDAR).Alice Kau, Ph.D, from the Extramural Program Staff at the Eunice Kennedy Shriver National Institute of Child Health and Human Development detailed the organizational structure of the six centers and five networks that now comprise the ACE program. This program is the evolution of the previous CPEA and START programs for autism. Edwin Cook, M.D., Visiting Professor of Psychiatry at the University of Illinois at Chicago, presented on the work at his Center of Excellence. Dr. Cook highlighted the exciting possibilities of getting the fields of statistical analysis and genetic data analysis to interact in more productive ways.

National Database for Autism

Finally, Michael Huerta, Ph.D., Director of NDAR at National Institute of Mental Health, presented on the development of NDAR. This database will attempt to leverage important scientific breakthroughs in the areas of high-volume data collection; computation and informatics; and collaborating laboratories. Dr. Huerta reported that he expected NDAR to have 10,000 Global Unique Identifiers (GUIDs) within ten months time. These identifiers will allow NDAR to associate a single research participant's genetic, imaging, clinical assessment and other information even if the data were collected at different locations or through different studies. The IACC discussed ways in which NIH could further incentivize non-NIH funded researchers to share their data.

Town Hall Meeting

During the afternoon session,the Services Subcommittee reported on its plans to hold a Town Hall meeting on July 24 in conjunction with the Autism Society of America Conference in Chicago. It reported on its recent subcommittee meeting at which HRSA and CDC presented on their autism activities. The Department of Education will present at the next Services Subcommittee meeting in August. Lastly, the Subcommittee expects that half of the October 23, 2009 IACC meeting will be devoted to services.

2008 Funding Analysis

The Subcommittee for Planning the Annual Strategic Plan Process reported on its activities to produce the next version of the Strategic Plan for Autism Research (SP), updated yearly as required by the Combating Autism Act (CAA). It reported on its review of a portfolio analysis of existing spending for FY08 so that it can be compared to the SP. Detailed analysis of autism research funding in 2008 by 13 public and private organizations was presented. The analysis showed that the National Institutes of Health and Autism Speaks awarded the greatest number of autism research grants in 2008 (422 vs. 203, respectively). Overall, private organizations provided 35% of the funding for autism research. These results will be used to measure the impact of funded research and identify scientific gaps. Public input will be solicited via RFI in July as part of the Strategic Planning process. Additionally, the IACC is convening a Scientific Workgroup to provide input for the updated version of the Strategic Plan which will be held September 30-October 1 in Bethesda, Md. The workgroup will be comprised of researchers, clinicians and individuals with personal family experiences with autism. The timing will ensure that participants from the research community have an understanding of what autism research is funded through the American Recovery and Reinvestment Act. The updated version of the SP will be delivered to the Secretary of Health and Human Services (HHS) and Congress by February 2010.

Summary of Advances

The IACC also considered how best to facilitate a report on Summary of Advances in autism research as required by CAA. IACC decided that the list of research that was produced by the Office of Autism Research (OAR) staff using database search protocols needed additional input from IACC members which will be forthcoming.

Open Session

The open session for public comment was limited to one speaker as the committee adjourned nearly two hours ahead of schedule and left before the appointed time for public comment. Several planned speakers, including individuals with autism and their families who traveled to Washington D.C. to share their views on living with autism, were not notified of the time change and were unavailable to present. Autism Speaks expressed its disappointment to IACC leadership after the meeting. The IACC must set a standard for sensitivity to the autism community. For the general population to understand the various challenges that people with autism face, including an inability to sit unaided for long periods of time, difficulties with disruptions to schedules and in interacting with large groups of people, to name a few, it is critical that the IACC, as the leading public/private forum for autism policy, displays an acute understanding and sensitivity to these challenges and provides accommodations starting with the public comments section of the meetings. IACC Chair Dr. Tom Insel responded and suggested that a special session be added to the October meeting where the committee, and the OAR staff, can see and hear from individuals on all parts of the autism spectrum. In addition, Dr. Insel indicated that he will seek to have HHS Secretary Sebelius attend the next meeting, and agreed that Secretary Sebelius would benefit greatly from meeting individuals representing the full autism spectrum. Autism Speaks looks forward to working with the OAR staff to make this happen and allow all voices of the autism community to be heard.