IACC Subcommittee for Basic and Translational Research Planning Group for Question 7 Conference Call - October 12, 2012

Topic	Topic Description
Date:	Friday, October 12, 2012
Time:	9:00 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: (800) 593-8958 Access code: 4852457
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 E-mail: IACCPublicInquiries@mail.nih.gov
Please Note:	For call-in issues, dial *0 so that an operator may assist you. 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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No in-person meeting; conference call only.

Time	Event
9:00 a.m.	Roll Call and Opening Remarks Donna Kimbark, Ph.D. U.S. Department of Defense (DoD) Chair, Basic and Translational Research Question 7 Planning Group Gemma Weiblinger – Designated Federal Official National Institute of Mental Health (NIMH)
9:15 a.m.	Discussion
11:00 a.m.	Adjournment

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• Roll Call and Opening Remarks

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 Friday, October 12, 2012.

In accordance with Public Law 92-463, the meeting was open to the public. Dr. Donna Kimbark, Chair, presided.

Participants:

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

Roll Call and Opening Remarks

This purpose of this call was to discuss the update for Question 7 of the IACC's Strategic Plan— "What other infrastructure and surveillance needs must be met?" Dr. Thomas Insel commented that the final text of the update to the Strategic Plan should be relatively short, as it was intended to be a brief and focused update. He emphasized that the Strategic Plan had milestones and deliverables and they should provide quantification whenever possible with regard to accomplishments and progress. Participants discussed the format and presentation of the information, including how to emphasize important points clearly and succinctly.

The Group discussed the material section by section, as presented in the Strategic Plan. The member responsible for each section draft presented its take-home message. It was noted that any material that was found to be missing could be added. Also material would be pared down in length, and explanatory graphics could be added.

Data-Sharing: Mr. Dan Hall said that the take-home message was that they needed to make the best possible use of available data. They also needed to determine how to encourage the research community to share information faster, better, and more often. He also noted gaps, and the progress that has been made in closing them.

Biobanking: It was noted that during the last teleconference that there should be a figure or table illustrating the pathway for tissue collection; it should include the number of specimens available, the condition of the tissue, and needs for the future. Group members also discussed the advances and gaps in this area. For example, Dr. Geraldine Dawson reviewed several sections beginning with brain tissue, and she emphasized the freezer failure and other barriers to progress. She also discussed bio-repositories and databases.

Surveillance: It was noted that prevalence estimates had been updated for the United States; and there was continuing effort to document increases over time, both through networks and national surveys. In terms of gaps, it was noted that prevalence was continuing to change; prevalence would need to continue to be monitored using the same methods. In addition, there were six projects under way examining prevalence among younger children, incorporating direct screening, and case confirmation. Another major issue was the change in diagnostic criteria, and how it would affect prevalence estimates. While identification disparities were improving and some of the gaps are closing, gaps still existed among certain racial and ethnic groups. These gaps contributed to the prevalence increases. Group members discussed the importance of consolidating information in tables and figures, and of transparency in their responses to the original objectives. It was agreed that DSM-5¹ be highlighted, given its importance.

Information and Communication: Even though communication and dissemination research was one of the overarching goals listed under Question 7, there were no objectives that specifically related to dissemination. This should be kept in mind regarding the larger Plan revision. It was noted that the heading "Information and Communication Dissemination" did not match the objectives. There was discussion about whether the heading should be better linked to the objectives (particularly C and E). They also discussed whether they should then consider the area of dissemination of information and communication strategy as a task for the 2013 Plan. The Group agreed that this would be a gap. There was also a discussion about the need to stop thinking in terms of the number of publications as the sole measurement for this area. Instead, they needed to start thinking about outcome measures focused on improvements in people's lives. It was noted that they could add information about the how the specific research study results were disseminated to the community, and mention the work of organizations such as the Autism Science Foundation and Autism Speaks in terms of translating the science. The summary of advances might be an appropriate publication for discussion of these positive activities.

Workforce Development: Ms. Singer said that this area related specifically to objective K – "To encourage programs and funding mechanisms that expand the research workforce, enhance interdisciplinary research training, and recruit early career scientists into the ASD field." During discussion it was noted that they needed the number of NIH-supported trainees from the previous year. It was noted that NIH had launched a new postdoctoral fellowship program in translational research, which has been successful. Data about the program were available. This data would be formatted as a table. The Group also discussed other data that could be included in this section.

Dr. Insel suggested that Group members should ensure that sections addressed objectives whenever possible. After it is determined which objectives have not been mentioned, the Group identify missing objectives, and determine whether these belong in other sections or if they had not been fulfilled yet. Group members discussed next steps, the timeline for the products, and the upcoming October 29-30, 2012 workshop.

Adjournment

The call was adjourned.

Certification

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

References

¹ American Psychiatric Association. 2000. Diagnostic and statistical manual of mental disorder. (5th ed.) Washington: American Psychiatric Association.

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• Meeting Transcript (PDF - 155 KB)

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