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Minutes of the Interagency Autism Coordinating Committee (IACC) Teleconference and Webinar on December 11, 2009

The Interagency Autism Coordinating Committee (IACC, also referred to as "the committee") convened a teleconference and webinar on December 11, 2009, from 9:00 a.m. to 1:00 p.m.

In accordance with Public Law 92-463, the meeting was open to the public. Thomas R. Insel, M.D., Director, National Institute of Mental Health, chaired the meeting.

Committee Members and 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; Ellen W. Blackwell, M.S.W., Centers for Medicare & Medicaid Services (CMS); Linda Birnbaum, Ph.D., National Institute of Environmental Health Sciences (NIEHS); Henry Claypool, Office on Disability; Judith Cooper, Ph.D. (representing Jim Battey, M.D., Ph.D.), National Institute on Deafness and Communication Disorders (NIDCD); Alan Guttmacher, M.D., Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD); Deborah Hirtz, M.D., National Institute of Neurological Disorders and Stroke (representing Walter Koroshetz, M.D.); Gail R. Houle, Ph.D., U.S. Department of Education (ED); Jennifer Johnson, Ed.D., Administration for Children and Families (ACF); Cindy Lawler, Ph.D., (representing Linda Birnbaum, Ph.D.), National Institute of Environmental Health Sciences (NIEHS); Lyn Redwood, R.N., M.S.N., Coalition for SafeMinds; Cathy Rice, Ph.D., (representing Edwin Trevathan, M.D., M.P.H.), Centers for Disease Control and Prevention (CDC); Edwin Trevathan, M.D., M.P.H., CDC; Alison Tepper Singer, M.B.A., Autism Science Foundation; Peter van Dyck, M.D., M.P.H., Health Resources and Services Administration (HRSA).

Call to Order and Opening Remarks

Dr. Thomas Insel welcomed the committee and took roll call of the attendees. He announced that Dr. Susan Shurin was appointed to the National Heart, Lung, and Blood Institute (NHLBI), as the Institute's new acting director and would be leaving the IACC. Dr. Alan Guttmacher, who had represented Dr. Francis Collins at the November 10, 2009 meeting, was appointed the Acting Director of the National Institute of Child Health and Human Development (NICHD) and would now be serving on the IACC representing that institute. He also mentioned that Dr. Collins had not yet nominated a proxy to attend IACC meetings in his place when he is unable to attend.

Dr. Insel told the committee that they should have received documents for the meeting over e-mail, including a packet of public comments, the meeting agenda, line edit drafts, and November 10, 2009 meeting minutes. He reminded the committee that all objectives in the strategic plan should be specific, measurable, achievable, realistic, and time-bound ("SMART").

Approval of November 10, 2009 IACC Full Committee Meeting Minutes

Ms. Lyn Redwood noted that a reference to a 2004 Institute of Medicine (IOM) report should be corrected to a 2007 report. With that change, the minutes were unanimously approved.

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Question VII – What Other Infrastructure and Surveillance Needs Must Be Met?

Ms. Alison Singer had drafted the language for a seventh strategic plan chapter/question on infrastructure to support autism research, which she reviewed with the committee. She explained that the idea for a seventh chapter had been developed in the IACC Scientific Workshop held September 30–October 1, 2009. The chapter incorporates items on infrastructure scattered throughout the existing plan, as well as a new section on surveillance, based on discussion during the Workshop. Ms. Singer explained that "What do we know" and "What do we need" had been combined because the section focused mostly on infrastructure needs. Ms. Ellen Blackwell noted the comment inserted by the Office of Autism Research Coordination (OARC) staff and agreed that workforce development should be addressed in this section. The committee discussed the different types of workforce development, including the development of service delivery professionals and research staff. Dr. Insel suggested that the chapter cite the number of researchers currently being trained to enter the autism field, including the number of K (Career Development) Award Fellowships and other specific training efforts through Federal and private organizations. He suggested trying to compare the needs of the field with the extent of the existing workforce.

The committee then began reviewing the chapter line by line. Dr. Jennifer Johnson recommended modifying language to qualify "the extent of which findings are" translated into practice and Dr. Linda Birnbaum later recommended adding translation into "policy," as well. Ms. Blackwell stated that it was important to emphasize that data-sharing is required of the Autism Centers of Excellence (ACEs) and recipients of grants under the American Recovery and Reinvestment Act (ARRA). Dr. Insel explained that data-sharing is not a requirement but that funding is contingent upon acceptable plans and means for data-sharing. The committee struck references to "patient" information and recruitment in the data-sharing section and added coordinating recruitment of "people with ASD" and their families.

Ms. Blackwell asked that the section on biobanking be modified to more positive language (e.g., "existing brain and tissue bank resources cannot satisfy the high and continuously increasing demand for post-mortem tissue" would become "brain and tissue bank resources must be expanded to meet the increasing demand...")

Dr. Ed Trevathan was asked to supply language on the new ASD prevalence statistics for the passage on surveillance, based on the CDC report to be released December 18, 2009. Dr. Peter van Dyck recommended specifically referring to the National Survey on Children's Health, which released its findings of a 1 in 91 prevalence rate for American children in October 2009. Ms. Redwood asked if the questionnaire used in the National Survey on Children's Health could be expanded to capture more information about ASD and Dr. van Dyck said that this was currently being considered. Dr. Trevathan was also asked to provide additional language about the importance of international autism surveillance, in order to compare prevalence across countries.

The committee reviewed the passage on communication and dissemination and Dr. Johnson recommended that "research findings" be better translated into practice, rather than "data." "People with ASD" was added to the list of individuals for whom communication channels should be improved. Dr. Johnson asked what was meant by "communication channels" and Ms. Singer said that she intended it to mean different modes of communication. The committee decided to move a sentence about ethical and clinical issues to the end of the passage, and recommended striking the final clause about also investigating the "social and clinical effects of diagnosis on the person and family." Ms. Singer offered to provide a few sentences describing the need to understand dissemination efforts.

Dr. Insel volunteered to provide several sentences on current training efforts for a section on workforce development. The committee discussed whether HRSA's Leadership Education in Neurodevelopmental and related Disabilities (LEND) programs, which received funds through the Combating Autism Act Initiative, should be included in the statistics about research workforce development. Ms. Singer stated that collecting information on training efforts would be important to gauge progress because many ARRA grants were focused on workforce development. The committee voted en bloc and unanimously accepted the discussed changes for the "What do we need and what do we know" section of Question VII.

The committee reviewed the "research opportunities" and agreed to re-label them "research resources," stating what resources currently exist. Dr. Birnbaum noted that the language pulled from Question III about using "existing research resources in toxicology to provide infrastructure for studying other forms of environmental risk" did not make sense. The committee suggested amending the language to identify existing clinical and biological resources in order to study other forms of environmental risk. Dr. Insel suggested inserting a list of the current tissue and DNA banks, such as the Autism Tissue Program (funded by Autism Speaks and NIH) and the DNA bank supported by NIMH. The committee agreed to add information about current surveillance efforts and asked that other population-based studies be cited in addition to the National Children's study. They also asked to insert a bullet into the resources section summarizing current animal resources for ASD research. The committee unanimously accepted all recommended changes.

The committee reviewed the first objective, which called for creating mechanisms to support private contributions of data to the National Database for Autism Research (NDAR) and the Interactive Autism Network (IAN). Ms. Redwood expressed concern with making recommendations for IAN, a private database supported by Autism Speaks. NDAR Director Mike Huerta, who was in attendance, recommended reframing the objective to link NDAR with other existing data resources by 2012. Dr. Insel stated his concern that "creating a mechanism" was not proactive enough, and recommended stating a goal, such as ensuring that 90 percent of newly-awarded ASD research projects are linked to NDAR. Dr. Huerta agreed to help with the wording to create a feasible objective.

The committee accepted the two objectives related to linking databases, relocated from Question VI and reviewed an objective proposed by the CDC about "preparing restricted-access public use datasets" and a prevalence estimator web tool. The committee agreed that the language was confusing and asked to focus on the prevalence estimator for the public. The committee asked to combine what had previously been two separate objectives calling to establish and maintain an international network of biobanks for the collection of brain, fibroblasts for pluripotent stem cells, and other tissue or biological material. Dr. Insel discussed tracking induced pluripotent stem cells (iPSC) and noted that they differed from embryonic stem cells in ways yet to be fully understood.

The committee asked Dr. Cathy Rice to divide a multi-part objective on Autism Developmental Disabilities Monitoring (ADDM) surveillance into long-term and short-term objectives and to provide dates. Dr. Trevathan explained that the ADDM network needed to build an infrastructure to be equipped to investigate reported clusters of ASD outside of the network locations (such as the report of increased prevalence among Somali immigrants in Minnesota). The committee asked Dr. Trevathan and Dr. Rice to provide alternate wording to make the objectives clearer.

The committee discussed the need to create funding mechanisms to encourage rapid replication studies of novel or critical findings. Dr. Johnson asked whether the quality of the research would be determined before or during the replication process. Members of the committee balked at the idea that money was an infrastructure mechanism. Ms. Redwood stated that mechanisms, such as a special emphasis review panel or another dedicated process, were needed to ensure replication of novel findings. Dr. Insel said that the initial breakthroughs needed to be made before replication was possible and noted that many of the formative genetic studies were replicated within months of the findings. Dr. Hann said that rapid replication of genetic findings was possible because of the existing genetic repositories and that similar resources may be needed to study environmental factors. The committee decided to keep the objective and identified a 2011 target date.

The committee voted to strike an objective regarding the ethical and legal considerations around a standard enrollment request for research and service projects to enable data sharing. They moved an objective calling for a workshop on clinical subtypes and individualized treatments to Question IV. The committee struck an objective on documenting outcomes for young adults after Ms. Blackwell confirmed that the objective was redundant to material in Question VI. The committee modified an objective on workforce development to specify the research workforce training. They then had an extensive discussion on an objective to include a dissemination plan in all newly-funded research projects. Dr. Johnson raised concerns with burdening researchers with a requirement that did not apply to other fields. Dr. Insel noted that outlining a dissemination plan would take up space in an already-shortened application. Others argued that a dissemination plan would be proactive in a highly visible field like autism. Dr. Lawler suggested creating a toolbox for researchers who want to responsibly disseminate their findings. The committee adopted the toolkit recommendation in lieu of the dissemination objective and voted en bloc to accept the changes to the objectives in Question VII.

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Question I – When Should I Be Concerned?

Dr. Johnson explained that the liaisons wanted to return the focus of Question I to childhood diagnosis and picked up reviewing their suggested changes where the committee had left off at the end of the November 10, 2009 meeting. The committee struck "ethnic" in the phrase "minority populations" and asked OARC to rework the final objective to convey how diagnosis can inform intervention choice and outcomes.

Reviewing the short-term objectives, the committee recommended changing an objective calling for the development of a "broadband" developmental screening tool to a "general" developmental screening tool. They asked to strike the bulleted list of populations to be studied. The committee discussed an objective to reduce disparities in accessing screening and diagnosis services. Dr. Insel suggested reframing the objective to make it measurable, such as "conduct research that can demonstrate a 50 percent reduction in health disparities in children and families accessing diagnosis by 2013." Dr. Trevathan said that such an objective would cut across multiple agencies and there was not an adequate infrastructure in place. Dr. Guttmacher asked if the causes of the disparities in diagnosis were truly understood and recommended conducting research to first understand the problem. The committee asked OARC to craft language for the objective. The committee decided to strike the next objective on outcomes related to diagnosis.

The committee reworded the first long-term objective to identify behavioral and biological markers that separately or in combination accurately identify children at risk for developing ASD before the age of two. They struck mention to preclinical markers for co-occurring disorders.

Dr. Trevathan asked for clarification of what constituted a measure to assess continuous dimensions of ASD symptoms and severity, a phrase used in the next long-term objective. He concluded that this could mean measures of social reciprocity and joint-attention skills. The committee voted to retain the original language of the objective while changing "parents" to "families."The committee voted not to include a proposed objective on the predictive relationship between early signs/symptoms and outcomes. The committee then voted unanimously to incorporate all discussed changes.

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Discussion of Next Steps for Preparing the Final Draft of the 2010 Strategic Plan

The committee granted OARC permission to contact government program officials at the appropriate agencies to generate budget estimates. Ms. Singer asked if members of the committee could review the strategic plan for internal consistency. The committee approved and Ms. Singer and Ms. Redwood volunteered to make the needed small editorial and formatting changes. Dr. Insel said that they should also ensure that content was not lost or repeated between chapters.

Dr. Hann asked the committee for their permission to label the objectives using A, B, C, D, etc., in order to simplify tracking progress during the research portfolio analysis. The committee approved. Dr. Insel drew their attention to a registry and repository "boot camp" being held by the Genetic Alliance on January 10, 2009, in Bethesda, Maryland. He noted that the International Meeting For Autism Research (IMFAR) would be held in Philadelphia, PA, on May 20 – 23, 2010 and suggested having a booth and a presentation at the event to talk about IACC progress. Dr. Insel asked that they take time during the January 19, 2009 meeting to discuss breaking science topics, such as emerging epigenetic tools and recommended inviting Dr. Andrew Feinberg from Johns Hopkins' McKusick-Nathans Institute of Genetic Medicine. Ms. Singer recommended a presentation on iPSC and its applicability to autism research. Ms. Redwood asked for a presentation on emerging treatments later in the year.

Dr. Johnson asked the committee if they supported adding references to recent research on access to diagnostic services to Question I. Ms. Blackwell approved of the recommendation and said that Dr. Gail Houle could also provide assistance. Dr. Johnson said she would put language together for committee review at the January 19th meeting. Dr. Insel mentioned that the Planning Subcommittee would convene at some point in February 2010 to talk about the strategic plan updating process for the coming year. Dr. Johnson asked if she would become a member of the Planning Subcommittee, since she had served as a panel liaison for the Scientific Workshop. Dr. Insel confirmed that the decision to add her officially could be made at the time of the Planning Subcommittee meeting.

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Closing Comments and Adjournment

Dr. Insel reminded the committee that the comments for the meeting had been distributed in writing and advised the members to review them. Ms. Redwood asked if the committee would be responding to public comments in the future and the committee agreed to address the issue in January. With that, the meeting was adjourned.

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Certification

These minutes of the IACC Full Committee were approved by the Committee on January 19, 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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