IACC Strategic Plan Update Question 7 (Infrastructure and Surveillance) Planning Group Conference Call - September 27, 2013

Announcement
Agenda
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Materials
Transcript

Topic	Topic Description
Date:	Friday, September 27, 2013
Time:	2:00 p.m. to 4:00 p.m. Eastern
Agenda:	The planning group for Question 7 (Infrastructure and Surveillance) will discuss updates for the IACC Strategic Plan.
Place:	No in-person meeting; conference call only
Conference Call:	Dial: (888) 942-8140 Access code: 2428642
Materials:	Meeting materials
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:	The conference call will be open to the public in listen-only mode. 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 HelpDeskIACC@gmail.com or call the IACC Technical Support Help Line at 415-652-8023. Accommodations Statement: The meeting will be open to the public via conference call. 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 at least 3 days prior to the meeting. Schedule subject to change.

No in-person meeting; conference call only. The materials for the meeting can be found here.

Time	Event
2:00 p.m.	Roll Call and Opening Remarks Thomas Insel, M.D. Director, National Institute of Mental Health (NIMH) Chair, IACC Susan Daniels, Ph.D. Acting Director, Office of Autism Research Coordination, NIMH Executive Secretary, IACC
2:15 p.m.	Discussion of Question 7 IACC Portfolio Analysis Documents and Strategic Plan Progress Reference Documents: 5-Year Strategic Plan Status Chart for Question 7 (Cumulative Funding) Distribution of funding across IACC Strategic Plan (Pie charts for 2008-2012) by Question Subcategory Pie Charts for Question 7 (2010-2012) Full project listings for Question 7 - 2011-2012 (2008-2010 project lists can be accessed from cumulative funding table via links to the Web Tool) Summary sheet for each question Discussion Questions: What progress has been made toward achieving Strategic Plan goals in terms of funding of Strategic Plan objective areas in the past 5 years? Which objectives have been partially or fully accomplished based on information available from the Portfolio Analysis documents? Which objectives received little or no funding, and why? What conclusions can be made about progress on Question 7 based on this funding information?
3:30 p.m.	Planning Group Discussion of Strategic Plan Update Process
3:45 p.m.	Wrap-up and Next Steps
4:00 p.m.	Adjournment

Roll Call and Opening Remarks
Discussion of Question 7 IACC Portfolio Analysis Documents and Strategic Plan Progress

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 27, 2013, from 2:04 p.m. to 3:39 p.m.

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

Participants:

Thomas Insel, Chair, IACC, National Institute of Mental Health (NIMH); Susan Daniels, Ph.D., Executive Secretary, IACC, Office of Autism Research Coordination (OARC), (NIMH); Donna Kimbark, Ph.D., U.S. Department of Defense (DoD); Catherine Rice, Ph.D., Centers for Disease Control and Prevention (CDC) (representing Coleen Boyle, Ph.D., M.S. Hyg.); Alison Tepper Singer, M.B.A., Autism Science Foundation (ASF)

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 7 of the IACC Strategic Plan (What Other Infrastructure and Surveillance Needs Must Be Met?). She noted that the goal of this call was to evaluate the status of the Question 7 objectives, by reviewing the funding and project information documents prepared by the Office of Autism Research Coordination (OARC). In the second conference call, external subject matter experts would be invited to work with the Planning Group to qualitatively assess the scientific progress made on Question 7 objectives and to identify research gaps.

Discussion of Question 7 IACC Portfolio Analysis Documents and Strategic Plan Progress

Dr. Daniels reviewed the materials, prepared by OARC, all of which are available on the IACC website. The materials included: a Compiled Objective Chart for Question 7 (2008 to 2012), an IACC Strategic Plan Funding Summary Sheet for Question 7, Project Lists for Question 7 from the IACC Portfolio Analyses (2008-2012), subcategory pie charts by year, and Strategic Plan pie charts by question and year. Projects were coded to Strategic Plan objectives in the Compiled Objective Chart. Dr. Daniels explained that a recommended budget had been provided for each objective in the IACC Strategic Plan in accordance with the Combating Autism Act in order to provide guidance to the agencies regarding how much it might cost to implement objectives developed by the committee.

Each objective was categorized using a "stoplight" approach: a red highlight indicated that zero projects and zero funding were associated with the Strategic Plan objective in a given year or across all 5 years; a yellow highlight indicated that some projects related to the Strategic Plan objective had been funded, but the funding amount was less than the IACC recommended budget; and green indicated that the recommended budget for the Strategic Plan objective had been met. Dr. Daniels noted that the IACC Portfolio Analyses for 2011 and 2012 were still in draft, so the data provided to the Committee for the call were still draft data, but that the data would be finalized soon and were not expected to significantly change.

Dr. Daniels also explained that for on objectives where projects were listed but no funding was indicated, that the projects may either have received all of their funding in a lump sum in the first year with no increments in following years, or that projects could be in a no cost extension, where the project continues, but is only using funds that were allocated in a previous year (no new funding was provided in that year). She also noted that there was a subcategory of objectives called "Other," which included research projects and funding that did not map to specific Question 7 objectives, and that this represented projects that were not associated with the gap areas identified in the objectives, but instead represented other types of core projects funded by agencies and organizations.

Dr. Daniels suggested that the Group review each of the objectives to determine what has been accomplished, what gaps remain, and any barriers. (Refer to the Compiled Objective Chart for Question 7, PDF – 167 KB)

7.A Conduct a needs assessment to determine how to merge or link administrative and/or surveillance databases that allow for tracking the involvement of people living with ASD in health care, education, and social services by 2009. There were no projects for this objective. The Group agreed that this objective (a needs assessment of how to merge or link administrative and surveillance databases) had not been addressed to date.

7.B Conduct an annual "State of the States" assessment of existing State programs and supports for people and families living with ASD by 2011. The overall recommended budget was partially met for this objective. The Group noted that the Centers for Medicare & Medicaid Services (CMS) has a "State of the States" assessment project underway, but that the project has not been completed yet. Dr. Thomas Insel suggested that the Group consider the overall progress on this objective to be 'yellow.' They agreed to check on the status of this project with Mr. John O'Brien of CMS before the next call. OARC will obtain this information.

7.C Develop and have available to the research community means by which to merge or link databases that allow for tracking the involvement of people in ASD research by 2010. The overall recommended budget was met for this objective. Dr. Insel noted that the projects under this objective addressed very different topics. For example, the Interactive Autism Network (IAN), which allows individuals with an ASD and their families to share information as part of part of online autism research effort, is different from the Group Health Cooperative Autism Registry, which is a health system that general medical and mental healthcare in Washington and Idaho.

Dr. Insel said that overall this objective should be considered "green" and on track because it had met the recommended budget and because of the large number of projects. Ms. Singer said that progress on this objective is good in terms of funding and the number of projects. However, they needed to assess whether the results were useful. Dr. Insel said that they should reserve questions about the value of projects for the invited experts on the next call.

7.D Establish and maintain an international network of biobanks for the collection of brain tissue, fibroblasts for pluripotent stem cells, and other tissue or biological material, by acquisition sites that use standardized protocols for phenotyping, collection, and regulated distribution of limited samples by 2011. This includes support for post-processing of tissue, such as genotyping, RNA expression profiling, and MRI. Protocols should be put into place to expand the capacities of ongoing large-scale children's studies to collect and store additional biomaterials, including newborn bloodspots, promoting detection of biological signatures. Support should also be provided to develop an international web-based digital brain atlas that would provide high resolution 3D images and quantitative anatomical data from tissue of patients with ASD and disease controls across the lifespan, which could serve as an online resource for quantitative morphological studies, by 2014. The overall recommended budget was partially met for this objective. The Group noted that there was a great deal of progress in this area (biobanks) in 2013. Dr. Insel suggested they consider this objective overall as a "generous yellow," because it is an area of enormous need. They agreed that there may be less brains tissue in banks now than, due to a freezer malfunction in 2012. Also, there had been no progress in terms of creating a national biobank. The members agreed that they should note in the text the need for greater activity using strong language. Dr. Insel noted that investment in Brainspan Atlas from 2010-2012 was not included in this assessment. He said that while the project was not specific to autism, the project would benefit autism research. He suggested that they note this in the text.

7.E Begin development of a web-based toolbox to assist researchers in effectively and responsibly disseminating their findings to the community, including people with ASD, their families, and health practitioners by 2011. The overall recommended budget was met for this objective. Dr. Insel said that there has been responsible dissemination of research findings. Ms. Alison Singer said that they had accomplished the overall intent of this objective, but the results were not in a web-based toolbox. Thus, while the objective appears to be incomplete based on the specific type of dissemination described in the objective, the intent of the objective had been fulfilled by other means. She agreed that over the last 5 years more research has become available on the Web for the community.

7.F Create funding mechanisms that encourage rapid replication studies of novel or critical findings by 2011. There were no projects for this objective. Ms. Singer questioned whether this objective (funding mechanisms for replication studies) still was necessary. If so, they should address why there has been no funding for this objective. Dr. Daniels pointed out that the creation of funding mechanisms is not an activity that would typically be funded through grants, so it would not likely be measured by looking at grant funding data. Ms. Singer said that the idea had been to develop an RFA for replication studies. Dr. Insel said that this was an important issue at the NIH but there are no RFAs for autism replication studies. They should consider this objective to be "red" In terms of overall progress. Dr. Insel suggested it may be premature to fund replication studies because work was still ongoing in primary studies.

7.G Develop a web-based tool that provides population estimates of ASD prevalence for states based on the most recent prevalence range and average identified by the ADDM Network by 2012. There were no projects for this objective. Dr. Catherine Rice said that progress had been made toward this objective (web-based tool for estimates of ASD) through an environmental tracking tool from CDC that covers autism as well as other developmental disorders. Dr. Daniels said that this tool would not be captured in the Portfolio Analysis because it is not specific to autism and thus is not counted by CDC as a part of their autism portfolio. She suggested that the group could add text to their summary to explain this. The Group agreed that since the intent of the objective has been accomplished, this objective should be considered overall to be "green."

7.H Create mechanisms to specifically support the contribution of data from 90% of newly initiated projects to the National Database for Autism Research (NDAR), and link NDAR with other existing data resources by 2012. The overall recommended budget was met for this objective. Ms. Singer said that the initial goal was to encourage linking between databases. She said that Autism Science Foundation grants required researchers to contribute data to NDAR. Sharing of data is occurring, but it might not be captured through the monitoring of grant funding. Dr. Insel said that they would need to obtain data from NDAR to quantify the progress on this objective.

7.I Supplement existing ADDM Network sites to use population-based surveillance data to conduct at least five hypothesis-driven analyses evaluating factors that may contribute to changes in ASD prevalence by 2012. The overall recommended budget was met for this objective. Dr. Rice said that the Compiled Objective Chart for Question 7 does not reflect specific analyses within each grant. There was a range of projects in this area (hypothesis-driven analyses evaluating changes in ASD prevalence). While not every publication might be listed, there were at least five ongoing analyses, she said. The ADDM network also provides the means to conduct replication studies.

Dr. Insel questioned the most appropriate way to describe the funding disparity in the text. Dr. Rice noted that the funding included in the Compiled Objective Chart for Question 7 reflected base funding not supplemental funding, which was awarded to the Medical University of South Carolina to conduct studies on screening and differences in diagnosis between the Diagnostic and Statistical Manual of Mental Disorders (DSM) IV and DSM-5. Dr. Insel asked whether they should they include all funding or should they focus on items that were in the original Plan? Dr. Daniels said that the Strategic Plan includes only research gaps related to the original objective. She added that the discussion indicated that the goals of the original objective had been achieved. Dr. Rice suggested that they consider future use of the data that they could emphasize. Dr. Insel suggested that they include wording to explain how these data were reported.

7.J Develop the personnel and technical infrastructure to assist states, territories, and other countries that request assistance describing and investigating potential changes in the prevalence of ASD and other developmental disabilities by 2013. The overall recommended budget was partially met for this objective. Dr. Rice said that the CDC provides personnel and technical help as requested. However, the funding for such projects would not be reflected in the Portfolio Analysis data because it is not occurring through grants. She noted that there are several projects funded through Autism Speaks that were not reflected in these data either. Dr. Daniels said that she and the OARC team would look into this. Dr. Rice said that while progress toward this goal has been achieved, there is still work to do.

7.K Encourage programs and funding mechanisms that expand the research workforce, enhance interdisciplinary research training, and recruit early-career scientists into the ASD field by 2013. The overall recommended budget was met for this objective. Dr. Donna Kimbark said that there might be a discernible increase in the research workforce due to an increase in funding from the American Recovery and Reinvestment Act of 2009 (ARRA). Dr. Daniels said that some of the investment in expanding the research workforce might be included in specific subject areas, not as recruiting. Dr. Insel said that they should mention this in the text. Ms. Singer said that they should be able to estimate funding that could be included in this category. The Group agreed that this objective could be categorized as "green."

7.L Expand the number of ADDM sites in order to conduct ASD surveillance in children and adults; conduct complementary direct screening to inform completeness of ongoing surveillance; and expand efforts to include autism subtypes by 2015. The overall recommended budget was partially met for this objective. Dr. Rice said that there had been progress in expanding the number of ADDM sites in order to conduct ASD surveillance in younger and older patients (children and adults). However, there was still work to be done. Dr. Insel asked Dr. Rice if she would help explain what aspects have not been funded.

7.M Support 10 "Promising Practices" papers that describe innovative and successful services and supports being implemented in communities that benefit the full spectrum of people with ASD, which can be replicated in other communities, by 2015. There were no projects for this objective. Dr. Daniels said that CMS had published several papers on promising practices but that no new papers had been published recently. CMS does include best practices from the states as examples of how to provide services to this population as part of its reports on state services for individuals with ASD. The Group agreed to ask IACC member, Mr. John O'Brien, about these papers and whether more were being developed or if CMS still perceived a need for this type of best practice dissemination work (or if other projects were covering this need in a different way). If the latter, the committee might conclude that this objective is no longer relevant and consider terminating it.

7.N Enhance networks of clinical research sites offering clinical care in real-world settings that can collect and coordinate standardized and comprehensive diagnostic, biological (e.g., DNA, plasma, fibroblasts, urine), medical, and treatment history data that would provide a platform for conducting comparative effectiveness research and clinical trials of novel autism treatments by 2012. The overall recommended budget was met for this objective. Ms. Singer noted that this objective was really a question about the value of the Autism Treatment Network. Is the ATN useful for researchers? Dr. Daniels said that they could discuss this on the next call with the invited experts.

7.O Create an information resource for ASD researchers (e.g., PhenX Project ) to share information to facilitate data sharing and standardization of methods across projects by 2013. This includes common protocols, instruments, designs, and other procedural do comments and should include updates on new technology and links to information on how to acquire and utilize technology in development. This can serve as a bidirectional information reference, with autism research driving the development of new resources and technologies, including new model systems, screening tools, and analytic techniques. The overall recommended budget was met for this objective. Dr. Kimbark said that they needed to hear from the invited experts about the adequacy of efforts to improve data sharing for researchers Dr. Insel said that he would like to know if common data elements had been developed and implemented by NDAR.

7.P Provide resources to centers or facilities that develop promising vertebrate and invertebrate model systems, and make these models more easily available or expand the utility of current model systems, and support new approaches to develop high-throughput screening technologies to evaluate the validity of model systems by 2013. The overall recommended budget was met for this objective. Dr. Insel said that there has been progress in the development of promising vertebrate and invertebrate model systems for neuroscience research but not for specifically autism. Within the Federal Government, new models are shared through Jackson Laboratories. In terms of invertebrates, fly models are almost universally shared. He said that perhaps this need has been largely met and is no longer an issue in the community. The Group decided to get more information from the invited experts.