IACC Planning Group for Question 7 (Infrastructure and Surveillance) Conference Call Announcement - November 8, 2013
Announcement
| Topic | Topic Description |
|---|---|
| Date: | Friday, November 8, 2013 |
| Time: | 10:30 a.m. to 12:30 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) 790-3354 Access code: 6280881 |
| 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 1 day prior to the meeting. Schedule subject to change. |
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Agenda
No in-person meeting; conference call only. The materials for the meeting can be found here.
| Time | Event |
|---|---|
| 10:30 a.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 |
| 10:40 a.m. | Discussion of Progress Toward Meeting Strategic Plan Question 7 Objectives "What Other Infrastructure and Surveillance Needs Must Be Met?" (Infrastructure and Surveillance) |
| 11:55 a.m. | Discussion of Progress Toward Meeting Question 7 Aspirational Goal: "Develop And Support Infrastructure And Surveillance Systems That Advance The Speed, Efficacy, And Dissemination Of Autism Research." |
| 12:25 p.m. | Wrap-up and Next Steps |
| 12:30 p.m. | Adjournment |
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Minutes
- 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 Friday, November 8, 2013, from 10:32 a.m. to 12:39 p.m.
In accordance with Public Law 92-463, the meeting was open to the public. Susan Daniels, Ph.D., Executive Secretary, IACC, 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); Julie Daniels, Ph.D., University of North Carolina at Chapel Hill; Maureen Durkin, Ph.D., Dr.P.H., University of Wisconsin-Madison; Dan Hall, M.B.A., National Database on Autism Research (NDAR), (NIMH); Paul Law, M.D.; Stan Niu, Ph.D., U.S. Department of Defense; (representing Donna Kimbark, Ph.D.); 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. The call participants briefly introduced themselves. Dr. Susan Daniels 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 of the Planning Group was to qualitatively evaluate the scientific progress made on the Question 7 objectives, and to identify any gaps with the help of external experts. In addition, the Group was to discuss progress made toward the aspirational goal of Question 7.
Discussion of Question 7 IACC Portfolio Analysis Documents and Strategic Plan Progress
Dr. Susan Daniels reviewed meeting materials prepared by the Office of Autism Research Coordination to provide funding and project information for Planning Group reference. All of the materials are available online. The materials included: a Compiled Objectives (cumulative funding) Table, a Project Data Table (2008-2010), and a Conclusions Table. The Compiled Objectives (cumulative funding) Table showed the alignment of funding across years (2008-2012) for each objective in Question 7. A Project Data Table (made available for the previous conference call) was provided to the Committee members, and is available online. This Table included some live links for 2008-2010 projects the 2008 through 2010. The Conclusions Table was a compilation of initial determinations about the funding progress on Question 7 objectives made by Question 7 Planning Group members during the previous conference call. This table provided a brief summary of the discussion of each objective.
Dr. Susan Daniels guided the Group through discussions of research progress, gaps, and barriers for each of the objectives. She began each discussion by reviewing the overall conclusions from the previous Planning Group call regarding funding, projects, and conclusions.
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. Dr. Susan Daniels noted that the Planning Group was not aware of any projects or funding in this area. Dr. Maureen Durkin pointed out that privacy concerns and the difficulty of linking data would be limitations. Mr. Dan Hall agreed, but said that these limitations could be overcome. Dr. Julie Daniels said that it was the ability to the combine large datasets that would yield information - for both services provision and research. Mr. Hall pointed out that the objective calls for an assessment of what would be possible using existing tools and resources. Perhaps this would require a public-private partnership.
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. Dr. Susan Daniels said that OARC staff had contacted the Centers for Medicare and Medicaid Services (CMS), which anticipated release of this publication in 2014. Dr. Thomas Insel mentioned a book - Autism Services Across America: Road Maps for Improving State and National Education, Research, and Training Programs1 by Peter Doehring - that might provide information similar to the "State of the States."OARC was tasked with reviewing the book.
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 Planning Group agreed that the overall recommended budget was met for this objective. Mr. Hall said that this objective has largely been accomplished. The NIH-funded National Database for Autism Research (NDAR) was linked with the Interactive Autism Network (IAN) and the Autism Speaks' Autism Genetic Resource Exchange (AGRE) databases. He said that NDAR contained data for 70,000 individuals, and another 40,000 people were registered in IAN. In addition, data from the Simons Foundation Autism Research Initiative soon would be linked with NDAR. This data was available to researchers, he said. The next step should be to promote this huge data resource within the autism community to increase the amount and type of information available. Dr. Insel asked Mr. Hall to provide information about the number of individuals included in 2009 compared with 2012, in order to demonstrate progress in this chapter of the Strategic Plan.
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 Planning Group had agreed that the overall recommended budget was partially met for this objective. The Group noted that there had been a great deal of progress in this area. Dr. Susan Daniels said that $5 million was committed to the NIH NeuroBioBank, though this funding was not included for this objective because the brainbank supports several brain disorders. Ms. Alison Singer described the Simons Foundation Autism Brian Net program, which was a network of sites (Autism Brain Net) to collect brain tissue: the University of California Davis MIND Institute, the Autism Tissue Program in Boston, Mt. Sinai School of Medicine in New York, and the University of Texas at Southwestern Medical School.
The aim of the program was to standardized collection protocols, and to create a single scientific advisory board that would oversee the distribution of tissue to the most relevant projects, based on merit, rather than location. The program was expected to launch in 2014. Dr. Insel asked for specific numbers to compare progress from 2009 to 2012. This was important because the amount of brain tissue samples had decreased due to a freezer malfunction, and this was an area of great need. Dr. Insel said that while the BrainSpan Atlas of the Developing Human Brain did not specifically address autism, autism research would benefit from the project.
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 Planning Group agreed that the recommended budget had been met, but few projects were categorized under this objective. In part, this was because some of the intent of this objective was achieved through other mechanisms. Mr. Hall said that NDAR "Data from Papers" was a tool that provided general summary information to the public, and allowed approved researchers to directly access data from published studies via PubMed. Ultimately NDAR could accommodate data from all human subjects' research in this way. This infrastructure would allow researchers to more simply and quickly attempt to replicate findings. Dr. Julie Daniels pointed out that the emphasis of the objective was on the use of online tools to disseminate information, and this strategy likely reached most people. However, she had concerns about underserved populations without access to the Internet. Public access to information was an important issue. Mr. Hall added that it was important to translate the science into language that was easier to understand. Ms. Singer noted that some of the foundations had done this through lay-friendly news articles. In addition, the Simons Foundation, Autism Speaks, and the Autism Science Foundation each catalogued research, and made it searchable by topic, key words, and publication date. Dr. Catherine Rice said that the CDC had a number of resources available online, including community reports and brief key-point summaries of CDC-funded studies. In addition, the CDC provided feedback, support, and guidance on disseminating research findings to grantees, if requested.
7.F Create funding mechanisms that encourage rapid replication studies of novel or critical findings by 2011. Dr. Susan Daniels said that there were no projects in this area that had been funded through grants. The Planning Group had noted that the creation of funding mechanisms or initiatives was not likely to be achieved by through grants. They also discussed the possibility that it might be too early for a significant focus on replication studies. Mr. Hall said that replication studies of key findings had not been funded, but the data was available to support such studies. In addition, the necessary algorithms and computational software were in development. Dr. Durkin said that replication studies were critical.
Ms. Singer noted that when the objective was written, the IACC recognized the need for a separate fast-track funding mechanism for the replication of critical or breakthrough studies. Dr. Rice said that she believed that this approach was aimed more at the replication of treatment and outcome studies. This could be very useful for medication trials. Mr. Hall said that said that fast-track funding could be applicable to basic research studies as well, if the data infrastructure already existed. Dr. Rice suggested limiting fast-track replication studies to those that that would have direct immediate clinical implications. Mr. Hall said that there were tools available now to provide researchers with access to original study data, analytic files, and software, in order to corroborate study results.
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. Dr. Susan Daniels said that the Planning Group had agreed the intent of the objective had been accomplished through the CDC's environmental tracking tool. However, the CDC autism project was not reflected in the portfolio analysis figures because it was not specific to autism. Dr. Rice said that the CDC's environmental tracking tool included the autism instruments from the Autism and Developmental Disabilities Monitoring (ADDM) Network, as well as other conditions. Users could perform searches in a variety of ways using the web-based tools. Based on the discussion, Dr. Susan Daniels concluded that this objective could be considered completed.
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. Mr. Hall provided an overview of NDAR data, use by researchers, and upcoming projects. In 2012, NDAR included 81 percent of all human subject research data from NIH extramurally-funded studies. It was likely that they would reach 90 percent in 2013. In addition, 250 scientists at 71 labs across 10 countries had requested access to the data. Research papers had been written using NDAR data, and numerous grant applications were being received to use NDAR data. In addition, data from 8,000 exomes and 2,500 images were available through the computational "cloud." Also, NDAR was working toward sharing data from 90 percent of publications on NIH extramurally-funded human subject studies. He noted that the quality of data also was improving. Mr. Hall said that he could share additional data about the size and usage of NDAR. Dr. Susan Daniels said that based on the information provided, it appeared that the data-sharing component of this objective was close to completion.
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 Planning Group had concluded that the recommended budget had been met. However, the entire budget of the ADDM Network was included in this figure because there was not a way to separate the individual ADDM site funding out. Dr. Rice said that with regard to the initial funding supplements, there had never been a separate data analysis supplement mechanism. However, several ADDM sites had applied for and received funding from other outside sources, such as Autism Speaks, to do additional data analysis.
Ms. Singer said that the original intent of this objective was to encourage the autism community to leverage the ADDM network infrastructure by providing supplemental grants that made use of the existing data collection. The inclusion of the entire ADDM budget in this objective made it difficult to tell if the objective was being accomplished. It made it appear that more work was being done - in terms of supplementing and leveraging the existing work - than was actually the case. There was a discussion about whether the funding related to supplements to the ADDM network should be included under this objective. Dr. Rice and Dr. Susan Daniels agreed to discuss this at a later date.
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 Planning Group previously agreed that the recommended budget had been partially met, and more progress was needed in this area. Dr. Susan Daniels noted that the CDC provided personnel to help states, territories, and countries, as requested. Dr. Rice said that Autism Speaks also provided support through the Autism Speaks Global Autism Public Health Initiative.
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 Planning Group previously concluded that the recommended budget had been met and exceeded. The Group also had asked for specific information about NIH projects for training and fellowship grants, along with a request that OARC examine the portfolio for training for people in the services workforce. Dr. Susan Daniels said that there four projects were identified, but that it resulted in a very small change in funding - roughly $1 million. The number for the NIH-supported training and fellowship grants that were coded according to the science was a much larger number, and not reflected in the total for the objective. The Group agreed that this objective needed continued support, and perhaps should be highlight as a future need. Dr. Rice suggested targeting research workforce related to services, service-based interventions, and across the lifespan.
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. Susan Daniels said that work addressed some of the concerns intended in this objective, such as adding younger and older populations. However, more work was needed. Dr. Julie Daniels said that there was ongoing work was on adult populations. This work included a follow-up of middle-aged individuals, who went through the TEACCH special education program (University of North Carolina at Chapel Hill); the study was funded by Autism Speaks. Dr. Rice also mentioned the follow-up2 to the 1980s Utah/UCLA Autism Epidemiologic Study.
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. Dr. Susan Daniels noted that CMS had released several such papers in 2008/2009, but had not done so since then. She had requested information from CMS about whether this was an ongoing project. Ms. Singer said that she thought that this objective could be removed from the Strategic Plan. Dr. Susan Daniels said that they could try to document that the intent of the objective had been met - that information about successful services and supports methods was being disseminated through other means.
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 Planning Group had agreed that the recommended budget had been met, and wanted to discuss with the experts the value of the Autism Treatment Network (ATN), and whether the ATN had been useful to researchers. Mr. Hall noted that data from the ATN was not broadly shared. Dr. Paul Law commented that the ATN was making significant progress on the development of clinical guidelines, which was its original mission. However, it took time to develop guidelines. He added that that the ATN's renewed focus toward clinical guidelines represented progress.
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. Mr. Hall said that NDAR used a non-identifying common subject identifier that was also used broadly across the autism research community. NDAR also supported the harmonization of human-subjects research data, including clinical, imaging, genomics, proteomics, electroencephalogram (EEG), eye tracking, and task-based functional magnetic resonance imaging (fMRI) data.
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 Planning Group agreed that the recommended budget had been met. Ms. Singer said that while a great deal had been accomplished, additional work was needed. Dr. Susan Daniels suggested that this might be a topic that should receive more input at the upcoming Workshop.
Aspirational Goal: Develop and support infrastructure and surveillance systems that advance the speed, efficacy and dissemination of ASD research. Dr. Durkin said that the disparity in identification, treatment, and access to services was a glaring surveillance omission. She said that surveillance needed to include more than monitoring the number of cases. It needed to include items such as functional status and lack of access to employment. However, she acknowledged that there was no good way to monitor these disparities at this time. Dr. Durkin also said that surveillance efficacy needed to be constantly improved. However, the current surveillance system was barely able to accomplish its immediate goals. There were no extra resources for the continued development of more efficient surveillance methods and tools. Dr. Susan Daniels asked for specific funding suggestions. Dr. Durkin said that research was needed to investigate more efficient ways of performing surveillance, possibly making use of electronic medical records.
Dr. Julie Daniels agreed that with increased electronic access to information, they should be investigating ways to make better use of this type of data, and to validate new approaches against current methods. Dr. Law agreed, saying that this could make collected information more accurate. Mr. Hall added that more work should be going into sharing data of all kinds. Dr. Julie Daniels noted that the challenge with surveillance data providing greater access to surveillance data is the lack of a form of consent. Dr. Durkin provided an example from cerebral palsy surveillance within the ADDM network. They now collect information on functional measures. Dr. Rice pointed out that in the case of autism, functioning is more challenging to assess than gross motor function in cerebral palsy. Motor function was only one domain in autism. Others included language, intellectual functioning, and behavior.
She said that function was a complex concept in autism and not easy to survey. She questioned whether they were redefining surveillance to include services and function, or simply basic population sets. Dr. Julie Daniels said that perhaps they should consider a shorter-term goal - identifying trackable features that could be expanded to enhance current surveillance protocols. There was likely a lot of data that wasn't captured because of limitations of time, resources, and ability to standardize it.
However, there were probably some opportunities that could be capitalized on. Ms. Singer noted that the OARC database of funded studies (with the name of the funder, the name of the PI, the university, the title, etc.) was a valuable piece of infrastructure. There might be other items that had not been captured in the objectives. Mr. Hall observed that they should be thinking about future directions for discussion at the Workshop.
Dr. Susan Daniels briefly reviewed the process for the upcoming Workshop and concluded the session.
Adjournment
The conference call was adjourned at 3:39 p.m.
Certification
I hereby certify that this meeting summary is accurate and complete.
/Susan Daniels/ November 15, 2013
Susan A. Daniels, Ph.D.
Executive Secretary, Interagency Autism Coordinating Committee
References
1 Doehring P. Autism Services Across America: Road Maps for Improving State and National Education, Research, and Training Programs (Baltimore: Paul H. Brookes Publishing Co., 2013)
2 Bilder D, Botts EL, Smith KR, et al. Excess mortality and causes of death in autism spectrum disorders: a follow up of the 1980s Utah/UCLA autism epidemiologic study. J Autism Dev Disord. 2013 May;43(5):1196-204. [PMID: 23008058]
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Materials
- 2012 IACC Strategic Plan Update
- 2011 IACC Strategic Plan
- Compiled Objective Chart for Question 7 2008 to 2012 (PDF – 167 KB)
- Conclusions by Objective for Question 7 (PDF – 152 KB)
Conclusions by Objective for Question 7 (Infrastructure and Surveillance)
Prepared for IACC Strategic Plan Update Question 7 Planning Group Conference Call November 8, 2013
| IACC Strategic Plan Objectives | Planning Group Summary | Funding 2008-2013 |
|---|---|---|
IACC Strategic Plan Objectives7A. 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. |
Planning Group SummaryThe Planning Group is not aware of any efforts (projects or funding ) that have been made to address this objective since it was created. The committee may want to determine whether a needs assessment is still needed, and if so, what are the barriers to conducting the needs assessment? Are efforts to link these types of databases already underway? |
Funding 2008-2013$0 |
IACC Strategic Plan Objectives7B. Conduct an annual "State of the States" assessment of existing State programs and supports for people and families living with ASD by 2011. |
Planning Group SummaryThe recommended budget was partially met, if the intention was that this project should be ongoing. The project did receive 2 years’ worth of funding. Centers for Medicare & Medicaid Services (CMS) is working on this project and anticipates release of the report in 2014. |
Funding 2008-2013$604,013 |
IACC Strategic Plan Objectives7C. 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. |
Planning Group SummaryThe recommended budget was met. The Interactive Autism Network (IAN) and Group Health Cooperative Autism Registry are two examples of projects that are responsive to this objective. This objective should be considered green with funding exceeding the recommended budget and a large number of projects. |
Funding 2008-2013$13,590,660 |
IACC Strategic Plan Objectives7D. 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.
|
Planning Group SummaryThe recommended budget was partially met. While progress has been made, this is still an area of enormous need. There may be fewer samples available for study currently than there were at the inception of the Strategic Plan due to the freezer failure in 2012. The NIH Neurobiobank was established in FY 2013 with funding supporting multiple brain bank sites. The Brainspan Atlas provides a useful source of information on gene expression in the brain during development, but the project is not reflected in the funding figures because it is not autism specific. In 2009, NIH funded the atlas with $18.4 million dollars and in 2010, NIH provided $16.5 million. |
Funding 2008-2013$24,752,287 |
IACC Strategic Plan Objectives7E. 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. |
Planning Group SummaryThe recommended budget was met but few projects were categorized to this objective. This objective has been partially achieved in terms of projects funded, but not through a web-based toolbox. Dissemination of findings has taken place through which efforts?. |
Funding 2008-2013$1,254,150 |
IACC Strategic Plan Objectives7F. Create funding mechanisms that encourage rapid replication studies of novel or critical findings by 2011. |
Planning Group SummaryThe recommended budget has not been met and there are no projects categorized to this objective. The Planning Group discussed the issue that creation of funding mechanisms is not likely to be achieved through grant funding, and therefore would not be reflected in the grant portfolio.. The group also discussed the possibility that it may be too early for replication studies, as the current focus appears to be on primary studies. |
Funding 2008-2013$0 |
IACC Strategic Plan Objectives7G. 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. |
Planning Group SummaryAutism tracking data is captured in CDC’s environmental tracking tool and is not reflected in the autism grant portfolio because it is a general tool that encompasses many disorders. The intent of this objective has been accomplished through the CDC project and can be considered completed. |
Funding 2008-2013$0 |
IACC Strategic Plan Objectives7H. 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. |
Planning Group SummaryThe recommended budget has been met for this objective. The objective to create mechanisms to support the contribution of data from newly initiated projects to NDAR has been met and NDAR has linked with several other existing data sources such as the ATP, AGRE and IAN. In 2012, 81% of NIH funded human subjects studies were contributing data to NDAR. |
Funding 2008-2013$9,583,653 |
IACC Strategic Plan Objectives7I. 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. |
Planning Group SummaryThe recommended budget has been met and the research goals in the objective have been achieved. Initially supplements were needed to support these analyses, but now the ADDM sites are well established and are conducting these kinds of analyses using funds from the ADDM grants themselves, so supplements are no longer needed. Note that the funding amount reflects the full funding of the ADDM sites and not just the supplements. |
Funding 2008-2013$23,810,274 |
IACC Strategic Plan Objectives7J. 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. |
Planning Group SummaryThe recommended budget was partially met. The Autism Speaks Global Health Initiative projects have been coded to their specific scientific areas and are not represented in this funding amount, but they also contribute toward this objective. The CDC provides personnel and help to States, territories and countries as requested but the budget for that assistance is not reflected in the portfolio analysis figures because this work is not done through grants. While progress has been achieved, ongoing efforts are needed in this area. |
Funding 2008-2013$1,369,963 |
IACC Strategic Plan Objectives7K. 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. |
Planning Group SummaryThe recommended budget was met for this objective. Many of the fellowships are coded according to the specific topic of the research conducted and thus are not represented in this funding figure. In 2008, NIH supported 46 autism related training/fellowship grants ($5.1 million dollars), and in 2012 NIH supported 78 such grants ($7.7 million dollars). |
Funding 2008-2013$24,702,276 |
IACC Strategic Plan Objectives7L. 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. |
Planning Group SummaryThe recommended budget was partially met, but it is noted that the full funding of the ADDM sites is reflected in Objective 7I. While supplements have been provided to 6 ADDM sites by CDC to add 4 year olds; 2 other ADDM sites have received supplements from CDC to conduct surveillance studies among 15 and 18 year olds; and one ADDM site has received a supplement from Autism Speaks for population-based screening, further work is needed to better understand prevalence in younger and older populations. While subtypes were included in earlier analysis, with the changes in the DSM to eliminate subtypes, this part of the objective may no longer be relevant. In the future it may be more useful to collect data on characteristics of children or other adults with ASD who participate in studies. |
Funding 2008-2013$3,681,460 |
IACC Strategic Plan Objectives7M. 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. |
Planning Group SummaryThe recommended budget was not met for this objective based on projects reported. The Planning Group would like an update from CMS on whether new papers are expected and if this is still something that is planned/needed. |
Funding 2008-2013$0 |
IACC Strategic Plan Objectives7N. 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. |
Planning Group SummaryThe recommended budget was met/exceeded for this objective, and several projects were categorized to this objective. This should be discussed in the second call as it relates to the value of the ATN and whether it is useful to researchers. |
Funding 2008-2013$19,353,505 |
IACC Strategic Plan Objectives7O. 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.
|
Planning Group SummaryThe recommended budget was met, with a small number of projects funded. NDAR has developed a data dictionary that is now widely used across the research community to standardize data terminology so that researchers know what they are accessing. Funding for this project is not reflected in the total for this objective because NDAR is coded elsewhere. It would be helpful to have input from experts on whether current data sharing protocols are worthwhile or effective. |
Funding 2008-2013$2,404,279 |
IACC Strategic Plan Objectives7P. 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. |
Planning Group SummaryThe recommended budget was met for this objective. When mouse models are made, they are shared via Jackson Labs. Other model organisms are shared even more widely. Is there a continuing need for special support for this? Consult with experts on this question. |
Funding 2008-2013$1,588,780 |
IACC Strategic Plan ObjectivesNot specific to any objective |
Planning Group Summary
|
Funding 2008-2013$43,431,065 |
IACC Strategic Plan ObjectivesTotal funding for Question 7 |
Planning Group Summary
|
Funding 2008-2013$158,028,308 |
This document is for discussion purposes only and does not reflect the decisions of the IACC
Highlighting of each total gives an indication of the progress toward meeting the IACC recommended budget for each objective. Green highlighting indicates that funding fully meets the recommend budget. Yellow highlighting denotes that funding for a particular objective partially meets the IACC recommended budget, while red highlighting indicates that there has been no funding towards the particular objective.
blue text is an insertion
red text is a deletion
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Transcript
- Meeting Transcript (PDF – 245 KB)
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