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Minutes of the Interagency Autism Coordinating Committee (IACC) Subcommittee for Basic and Translational Research Strategic Plan Question 2 Planning Group, Conference Call on September 27, 2013

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The Interagency Autism Coordinating Committee (IACC) Subcommittee for Basic and Translational Research Strategic Plan for Autism Spectrum Disorder, Question 2 Planning Group, convened a conference call on Thursday, September 27, 2013, from 1:37 p.m. to 3:37 p.m.

In accordance with Public Law 92-463, the meeting was open to the public. Walter Koroshetz, M.D., Chair, presided.

Participants:

Walter Koroshetz, M.D., Chair, Question 2 Planning Group, National Institute of Neurological Disorders and Stroke (NINDS); Susan Daniels, Ph.D., Executive Secretary, IACC,National Institute of Mental Health (NIMH); Lyn Redwood, R.N., M.S.N., Coalition for SafeMinds; Alison Tepper Singer, M.B.A., Autism Science Foundation

Roll Call and Opening Remarks

Dr. Susan Daniels welcomed the Planning Group and members of the public and called roll. She said that this Group was charged with the update for Question 2 of the IACC Strategic Plan (How Can I Understand What is Happening?). She noted that the goal of this call of the Planning Group was to evaluate the status of the Question 2 objectives, by reviewing the funding and project information documents prepared by the Office of Autism Research Coordination (OARC). In the second conference call, the Planning Group would be able to work with outside subject matter experts to qualitatively assess the progress made on Question 2 objectives and to identify gaps.

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Discussion of Question 2 IACC Portfolio Analysis Documents and Strategic Plan Progress

Dr. Daniels reviewed these materials, all of which are available online. The materials included: a Compiled Objective Chart for Question 2 (2008 to 2012), an IACC Strategic Plan Funding Summary Sheet for Question 2, Project Lists for Question 2 from the IACC Portfolio Analyses (2008-2012), and subcategory and whole Strategic Plan pie charts. In order to develop the Compiled Objective Chart for Question 2, Dr. Daniels said that OARC staff collected information from federal agencies and private funders. Projects were coded to Strategic Plan objectives. Objectives were roughly categorized using a "stoplight" approach: red indicates that the objective has no funding and/or projects; yellow indicates that some progress has been made in term of the number of projects and recommended budget, but additional work is needed; and green indicates that recommendations have been met in terms of number of projects and recommended budget. She noted that data were provided from the upcoming Portfolio Analysis for 2011 and 2012, but the data are still subject to minor changes until the final document is released. Dr. Daniels also explained that some agencies fund their projects by providing yearly increments of funding in a multiyear project, whereas others provide the entire cost of a multi-year project in the first year, and that these differences can affect the patterns observed from year to year. In projects funded by the second method, they appear to have zero funding in the "out-years," but in actuality, the projects are being conducted using funds that were provided at the start of the project. Dr. Daniels also said that there was a category of objectives called "Other," which included research projects and funding that did not map to specific objectives.

Dr. Daniels suggested that the Group go through the objectives to determine what has been accomplished, what gaps remain, and any barriers. Ms. Lyn Redwood asked for information about specific publications and findings for each objective. Dr. Daniels said that identifying all the individual publications that relate to each of projects in each of the 78 objectives was outside the scope of the Portfolio Analysis, as this would be an immense task involving thousands of publications. She noted that the IACC Portfolio Analysis Web tool had a link to NIH Reporter, which had links to NIH-funded research publications. However, it might not be comprehensive. Often researchers do not include the NIH funding grant information in publications, making it difficult to identify publications related to specific NIH grants. This was a finding discussed in the IACC/OARC Autism Spectrum Disorder Research Publication Analysis, which provides information on publications as they relate to Strategic Plan objectives. The report can be found on the IACC website.

Ms. Alison Singer asked why some of the 'Other' projects were outside of the scope of IACC objectives. Dr. Daniels said the purpose of the Strategic Plan was to identify research gaps. In part, the projects categorized to 'other' reflected ongoing research that was funded prior to the creation of the IACC Strategic Plan or research that does not fall into gap areas (i.e., funding on areas that were considered to already be well-funded or mainstream at the time when the Strategic Plan was developed). Also, agencies and private funders are not limited to funding research related to the objectives in the Strategic Plan and may have additional programs and areas of focus. Ms. Redwood noted that the funding of 'Other' projects had grown over time. Dr. Walter Koroshetz said that the projects under 'Other' were very important research topics, in his view.

The Planning Group evaluated each Question 2 objective (refer to the Question 2 Compiled Objective Chart, PDF – 146 KB).

2.S.A Support at least four research projects to identify mechanisms of fever, metabolic and/or immune system interactions with the central nervous system that may influence ASD during prenatal-postnatal life by 2010 (Fever studies to be started by2012). Dr. Koroshetz said that the funding has been stable across the years. However, the scientific opportunities and interests have increased. Ms. Redwood noted gaps in microbiome/gut/immune research. Dr. Daniels suggested that they do additional research on their own to add to the Question 2 draft document.

2.S.B Launch three studies that specifically focus on the neurodevelopment of females with ASD, spanning basic to clinical research on sex differences by 2011. Ms. Singer noted that one of the projects was an Autism Center of Excellence (ACE) center focused on females with autism. She said there is a recognition that this topic is important and research is advancing. Ms. Singer also said that the number of projects doesn't necessarily mean better research or substantial progress on an objective.

2.S.C Identify ways to increase awareness among the autism spectrum community of the potential value of brain and tissue donation to further basic research by 2011. Identify ways to increase awareness among the autism spectrum community of the potential value of brain and tissue donation to further basic research by 2011. The members agreed that more tissue is needed. Ms. Singer said that number of projects in this objective could be misleading. For example, in 2009 there were projects on the processing of tissue samples, but these did not increase the amount of tissue available for research. The Group agreed that it would be important to mention the freezer malfunction in 2012 that resulted in a loss of more than 100 brain samples. While the Group acknowledged the importance of projects to improve collection methods and increase awareness, these were not research projects. The Group members agreed that this is an objective that still needs attention and even may have regressed in terms of projects.

2.S.D Launch three studies that target improved understanding of the underlying biological pathways of genetic conditions related to autism (e.g., Fragile X, Rett syndrome, tuberous sclerosis complex) and how these conditions inform risk assessment and individuallized intervention by 2012. Dr. Koroshetz said that there has been a great deal of work on genetic conditions related to autism. Funding appeared to be increasing. Dr. Daniels noted that investment in this area had doubled since 2009. Ms. Singer noted that there is an ACE center focused on tuberous sclerosis. The Group agreed that this objective is on track.

2.S.E Launch three studies that target the underlying biological mechanisms of co-occurring conditions with autism, including seizures/epilepsy, sleep disorders, wandering/elopement behavior, and familial autoimmune disorders, by 2012. Ms. Singer said that they were doing well with the number of projects and the amount of funding. However more awareness is needed for comorbid conditions. They agreed that the IACC has increased the emphasis on comorbid conditions. They agreed that additional research was needed. Dr. Daniels noted that there were some overlapping areas in the Strategic Plan and that some projects might have been classified under a different objective.

2.S.F Launch two studies that focus on prospective characterization of children with reported regression to investigate potential risk factors by 2012. Dr. Koroshetz said that it has been difficult to document cases of regression. Dr. Koroshetz noted the objective called for two studies and that has been achieved. Ms. Redwood said that this is a very important topic that needs additional research. Ms. Singer noted that there may be methodological problems in designing studies to assess the question of regression.

2.S.G Support five studies that associate specific genotypes with functional or structural phenotypes, including behavioral and medical phenotypes (e.g., nonverbal individuals with ASD and those with cognitive impairments) by 2015. The Planning Group noted that there was a great deal of research and funding for the assessing possible associations of specific genotypes with functional or structural phenotypes /funding, including two ACE centers. In fact, the actual spending doubled that recommended by the IACC. Ms. Singer pointed out that a large portion of the research is from a single funder.

2.L.A Complete a large-scale, multidisciplinary, collaborative project that longitudinally and comprehensively examines how the biological, clinical, and developmental profiles of individuals, with a special emphasis on females, youths, and adults with ASD, change over time as compared to typically developing people by 2020. Ms. Singer observed that the IACC changed this objective. Therefore, projects from 2008 might not reflect the objective as described in the Compiled Objective Chart document. Dr. Daniels also noted that the number of objectives in the Strategic Plan increased over time, so some projects may have been reclassified. Dr. Koroshetz said that there were a number of small projects. The Group agreed that there was a need for research on individuals with ASD as they age and risk factors for medical conditions. Ms. Redwood said that funding was very low. They agreed that more clinical studies were needed. They also wanted to evaluate studies in more detail.

2.L.B Launch at least three studies that evaluate the applicability of ASD phenotype and/or biological signature findings for performing diagnosis, risk assessment, or clinical intervention by 2015. Ms. Redwood said that the actual funding was low compared with the recommended amount. Ms. Singer said that there were mostly small studies. However, the inclusion of two ACE centers in this area was promising going forward. Dr. Koroshetz added that this is a nascent area of research. They agreed that the area of phenotypes and/or biologic signals for diagnosis, risk assessment, and intervention was a very important and growing area.

Other: Dr. Koroshetz said that they should look at these projects more closely on their own time and develop comments about the value.

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Wrap-Up and Next Steps

Dr. Koroshetz volunteered to draft a 1-5 page summary of their discussion and would share it with the other members for review and comments.

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Adjournment

The conference call was adjourned at 3:37 p.m.

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Certification

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

/Susan Daniels/ November 12, 2013
Susan A. Daniels, Ph.D.
Executive Secretary, Interagency Autism Coordinating Committee

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