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IACC Subcommittee for Basic and Translational Research Planning Group for Question 7 (What Other Infrastructure and Surveillance Needs Must Be Met?) Conference Call - September 20, 2012

meeting announcement Announcement
Topic Topic Description
Date: Thursday, September 20, 2012
Time: 9:30 a.m. to 11:00 a.m. Eastern
Agenda: The planning group for Question 7 will discuss updates for the IACC Strategic Plan.
Place: No in-person meeting; conference call only
Conference Call: Dial: (888) 469-1765
Access code: 1885970
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 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 or call the IACC Technical Support Help Line at 443-680-0098.

Accommodations Statement:
Individuals who participate by using this electronic service and who need special assistance such as captioning or other reasonable accommodations should submit a request to the Contact Person listed on this notice.

Schedule subject to change.

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meeting agenda Agenda

No in-person meeting; conference call only.

Time Event
9:30 a.m. Roll Call and Opening Remarks

Thomas Insel, M.D.
National Institute of Mental Health (NIMH)
Co-Chair, Basic and Translational Research Question 7 Planning Group

Donna Kimbark, Ph.D.
U.S. Department of Defense (DoD)
Co-Chair, Basic and Translational Research Question 7 Planning Group

Gemma Weiblinger – Designated Federal Official
National Institute of Mental Health (NIMH)
9:45 a.m. Discussion
11:00 a.m. Adjournment

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meeting minutes Minutes

The Interagency Autism Coordinating Committee (IACC) Subcommittee for Basic and Translational Research Strategic Plan Question 7 Planning Group convened a conference call on Thursday, September 20, 2012.

In accordance with Public Law 92-463, the meeting was open to the public. Dr. Donna M. Kimbark, Ph.D., Co-Chair, and Dr. Thomas Insel, M.D., Co-Chair presided.


Thomas Insel, M.D., Co-Chair, IACC, National Institute of Mental Health (NIMH); Donna M. Kimbark, Ph.D., Co-Chair, U.S. Department of Defense; Gemma Weiblinger, M.A., Designated Federal Official, National Institute of Mental Health (NIMH); Elizabeth Baden, Ph.D., Office of Autism Research Coordination (OARC), (NIMH); Dan Hall, M.B.A., National Database for Autism Research (NDAR), (NIMH); Roger Little, Ph.D., National Institute of Mental Health (NIMH); Catherine Rice, Ph.D., Centers for Disease Control and Prevention (CDC); Alison Tepper Singer, M.B.A., Autism Science Foundation (ASF)

Welcome, Roll Call, and Opening Remarks

Ms. Gemma Weiblinger welcomed participants to the call for the Planning Group to update Question 7, "What other infrastructure and surveillance needs must be met?" of the IACC Strategic Plan for Autism Spectrum Disorder Research. Dr. Thomas Insel called the roll and reviewed the update process, which was intended to capture substantive advances since January 2011. Dr. Donna Kimbark emphasized that this is an update and not a revision. She said that the purpose of this teleconference call was for the Planning Group to discuss and assign the Question 7 sections.

Data Sharing

Dr. Insel said that a much broader conversation was ongoing in the research community about how to move from claims data to data that were linked to electronic medical records and about the barriers involved. He said that in the data-sharing section, this Planning Group might want to consider gaps, or data needs, and the importance of going beyond claims data.

Dr. Catherine Rice said that efforts were also needed to improve the consistency and quality of the clinical indicators entered into medical records. Dr. Insel said that common data elements were used in creating these standardized platforms for defining various clinical indices, but this had not occurred broadly in the autism community. He also said that there has been discussion about whether it was time to add a common element structure that allows for better screening, diagnostic standardization, and follow-up. This would allow comparisons across many different sources, and would help in aggregating data in a way that makes more sense. However, if the data were not interoperable, aggregation would be difficult. Mr. Dan Hall noted progress in this area regarding the National Database for Autism Research (NDAR), as well as in harmonization across a number of data sources.

Dr. Insel said that if the original short-term goal from 2010 was to create mechanisms, to support the contribution of data, from 90 percent of newly initiated projects, it would be good to know where this effort stands. Mr. Hall updated the group on this initiative. He added that at the National Institutes of Health a program to ensure that grants have specific data-sharing terms has been instituted. Ms. Alison Singer suggested that it would be a useful to note that NDAR could be used as a resource for data collection.

Ms. Singer also said that the update should focus on the value of the data, particularly for NDAR. Mr. Hall said it would be useful to be specific about the data that were available in January 2011 and which data were currently available. Regarding other data-sharing issues that should be included, Mr. Hall discussed some recent developments and capabilities. Dr. Kimbark suggested networking with other repositories beyond NDAR. It was noted that the Planning Group could include, as a gap, the possibility of creating a database that would consolidate all of the state Medicaid data into one useable database.

Mr. Hall said that NDAR was a portal to many other repositories of research data. Dr. Insel suggested that it might be useful to clarify NDAR as a way to access other data sets and to describe the ontology that would allow it to become useful. It was noted that being able to see the linkage to NDAR would be helpful, as would being able to know what other efforts are not yet linked to NDAR. Dr. Insel said that the original vision was to tie together the universe of research projects. He summarized that the Planning Group seemed to want to emphasize, as a gap, other data sets that might not be in NDAR but that should be made available. This would be particularly useful for researchers who are looking at the utilization of services or who want to pursue work in the science of implementation and dissemination. Mr. Hall agreed to write a paragraph for this section.


Dr. Roger Little said that outside of the Autism Tissue Program (ATP), the largest collection of autism samples was at the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) Brain and Tissue Bank housed at the University of Maryland, School of Medicine in Baltimore. Dr. Insel said that for the update, it would be important to mention the ATP freezer failure, which made the autism community aware of the precarious state of this collection and that changes were needed. It was suggested that this should be discussed in the context of an emergency response initiative because of the lack of tissue available for research. Dr. Insel added that the other issue heard from grantees is that even if tissue were available, its quality was not sufficient to answer the main questions. It also was noted that there is a need to discuss the standardization of biobanking, as well as the need for more samples.

Dr. Little discussed the NIH Neurobiobank – an initiative supported by NIMH, the NICHHD, and the National Institute of Neurological Disorders and Stroke (NINDS) – which aims to inform the public about the need for tissue donations for research. Dr. Little also discussed the need for the development of a phenotype standard for control individuals, so that brain banks across the country would have a uniform way to characterize brain tissues.

Dr. Insel noted two emerging breakthroughs. One was the possibility of somatic mutations as a cause of autism. 1,2, 3 This suggested that children with autism might be even more likely to have variations in DNA structure in particular cell groups in the brain. He said that the first reports of these mutations in other disorders – such as hemimegalencephaly – have emerged. The second breakthrough was CLARITY, an imaging approach that allows visualization of the precise neuroanatomy of post mortem tissue.4

However, it was noted that there was not yet a clear pathway for collecting additional tissue. In the update, the Planning Group should be specific about how many brains were available and the best estimate of their value. For biobanking, the Planning Group decided to include not just autism but also related syndromes. The update also would include information on stem cells and the most up-to-date figures for DNA banks. Dr. Little was assigned these tasks.


Dr. Rice updated the Planning Group on the surveillance-related activities of the Autism and Developmental Disabilities Monitoring (ADDM) Network. In terms of recent advances, researchers have been looking at the drivers behind prevalence changes. Dr. Insel said that Dr. Rice had provided material for discussion, including the numbers from the most recent ADDM report. Dr. Insel commented that the original plan had been to develop by 2012 a web-based tool that would provide population estimates for states based on the most recent prevalence range and average identified by the ADDM Network. He asked how much of this had been accomplished. It was noted that there was a need for a real-time reporting system/access to the current data on the Web. This could be identified as a gap, because there was a need to improve the communication of the surveillance data to the general population.

Dr. Insel suggested that the Planning Group go back to the original language of the IACC guidance to indicate priorities. Given that so many of them involve ADDM, the Group should identify what has been delivered, what has not, and where the gaps remain. Dr. Rice agreed to take this task.


The Planning Group acknowledged that the need to improve communication about data and collection methods should be included under 'communication and information' rather than under 'surveillance.' Ms. Singer commented that the Simons Foundation was funding a project and that this might be an area of focus in the future. Dr. Insel said that dissemination would also be addressed under Question 5, and that the text on dissemination for Question 7 could be brief. Ms. Singer agreed to draft the communication text. Dr. Insel commented on the need to include workforce training and noted that a mechanism was needed to help investigators as they transition from postdoc to independent research, which is a common gap in the biomedical sciences as a whole.

The suggestion was made to add material about the result of reduced funding under the American Recovery and Reinvestment Act (ARRA), which was a reduction in workforce or at least a reduction in support. Dr. Insel and Ms. Singer agreed to work together on this piece. Dr. Insel said that many of the different objectives that fall under Question 7 do not fit within the four categories they discussed during this call, and would need to be addressed. It was agreed that the Planning Group would go through the objectives under Question 7 and assign each to a major topic within Question 7.

Closing Remarks and Adjournment

Planning Group members agreed to have an initial draft ready by the October 5, 2013, and to schedule another teleconference for the week of October 8th to discuss and finalize the draft. The draft would be due to the full IACC by October 22, 2013. The teleconference call was adjourned.


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

/Susan Daniels/ November 16, 2012
Susan A. Daniels, Ph.D.
Executive Secretary, Interagency Autism Coordinating Committee


1 Neale BM, Kou Y, Liu L et al. Patterns and rates of exonic de novo mutations in autism spectrum disorders. Nature. 2012 Apr 4;485(7397):242-5. [PMID: 22495311]

2 Kong A, Frigge ML, Masson G et al. Rate of de novo mutations and the importance of father's age to disease risk. Nature. 2012 Aug 23;488(7412):471-5. [PMID: 22914163]

3 O'Roak BJ, Vives L, Girirajan S et al. Sporadic autism exomes reveal a highly interconnected protein network of de novo mutations. Nature. 2012 Apr 4;485(7397):246-50. PMID: 22495309]

4 Tomer R1, Ye L1, Hsueh B2 et al. Advanced CLARITY for rapid and high-resolution imaging of intact tissues. Nat Protoc. 2014 Jul;9(7):1682-97. Epub 2014 Jun 19. [PMID: 24945384]

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