Welcome to today s AIR-P/ATN Advances in Autism Research & Care Webinar Series!

Transcription

1 This research activity was supported by a cooperative agreement UA3 MC11054 through the U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Research Program to the Massachusetts General Hospital. This work was conducted through the Autism Speaks Autism Treatment Network serving as the Autism Intervention Research Network on Physical Health. Welcome to today s AIR-P/ATN Advances in Autism Research & Care Webinar Series! Please dial in with the telephone number and access code displayed in your gray control panel. Once you dial in, you will hear silence and remain muted until the broadcast begins.

2 The Interagency Autism Coordinating Committee. Susan A. Daniels, Ph.D. Director, Office of Autism Research Coordination National Institute of Mental Health National Institutes of Health Executive Secretary, Interagency Autism Coordinating Committee December 16, 2014

3 The Office of Autism Research Coordination OARC/NIMH coordinates and manages the Interagency Autism Coordinating Committee (IACC) and related cross-agency autism spectrum disorder (ASD) activities, programs, and policies. OARC provides assistance to the IACC by: o o o o o o o Communicating information about the IACC and federal ASD research activities to Congress, other government agencies, and the public Coordinating cross agency efforts Planning meetings, conferences, and other venues for interaction between the IACC and the public Assisting the IACC in its strategic planning and ASD research monitoring activities Conducting analyses and preparing reports for the IACC and Congress Gathering public input on issues related to ASD to inform the committee's work Developing and disseminating information about ASD to the public

4 Interagency Autism Coordinating Committee Legislative Background Children s Health Act of 2000 Established IACC to coordinate activities within HHS, including NIH and CDC Membership included other federal agencies and parents of individuals with ASD Combating Autism Act of 2006: Reconstituted Interagency Autism Coordinating Committee to: Enhance Federal coordination of autism efforts Provide priorities and accelerate the pace of autism research IACC Membership: Federal and Public members Public members include self advocates, parents, family members, leaders, service providers, researchers and other stakeholders Combating Autism Reauthorization Act (CARA) Renewed the IACC through 2014

5 Autism CARES Act of 2014 The Autism Collaboration, Accountability, Research, Education and Support Act - Public Law , enacted August 8, 2014: : Reauthorizes the IACC and other programs through September 30, 2019 Establishes a National Autism Spectrum Disorder Initiative within HHS, led by an official charged with implementation of autism activities and ensuring that HHS activities are not unnecessarily duplicative with those of other federal Departments and agencies Supports continued efforts of IACC to advance ASD research Incorporates increased focus on services into various activities of the IACC (e.g., the IACC Strategic Plan) Provides additional membership criteria Incorporates a significant emphasis on the needs of adults and transitioning youth services, requiring HHS to provide a Report to Congress on this topic

6 What the IACC does: Coordinates and monitors federal and non-federal activities (research and services) Gathers public input Produces advisory documents that can be used by federal agencies and others Advises the HHS Secretary; makes recommendations Serves as a public forum for discussion of issues related to ASD

7 What the IACC does NOT do: Does not fund research Does not set policy Does not have authority to force agencies to fund specific projects or set specific policies The IACC s role is to bring federal agencies and public stakeholders together to coordinate and focus efforts to accelerate progress.

8 How does the IACC operate? Required to hold meetings of the full committee at least twice a year Meetings include presentations from experts and community members, as well as public comment Committee forms subcommittees and planning groups to allow focused work on specific projects All products produced by the committee must be discussed and approved by the full committee

9 Who serves on the IACC? IACC Membership Federal Members Thomas Insel, M.D. (NIMH, NIH) James Battey, M.D., Ph.D. (NIDCD, NIH) Linda Birnbaum, Ph.D. (NIEHS, NIH) Coleen Boyle, Ph.D., M.S. Hyg. (CDC) Francis Collins, M.D., Ph.D. (NIH) Tiffany Farchione, M.D. (FDA) Alan Guttmacher, M.D. (NICHD, NIH) Laura Kavanagh, M.P.P. (HRSA) Donna Kimbark, Ph.D. (DoD) Walter Koroshetz, M.D. (NINDS, NIH) John O Brien, M.A. (CMS) Linda Smith (Administration for Children and Families) Michael Yudin (Dept of Education) Sharon Lewis (Administration for Community Living) Public Stakeholder Members Idil Abdull (Parent, Somali American Autism Foundation) James Ball, Ed.D., B.C.B.A.-D. (JB Autism Consulting) Anshu Batra, M.D. (Parent & Developmental Pediatrician) Noah Britton, M.A. (Self advocate) Sally Burton-Hoyle, Ed.D. (Family member, Eastern Michigan University) Matthew Carey, Ph.D. (Parent) Wendy Chung, M.D., Ph.D. (Simons Foundation) Jose Cordero, M.D., M.P.H. (University of Puerto Rico) Jan Crandy (Parent, Nevada State Autism Assistance Program) Geraldine Dawson, Ph.D. (Duke University) David Mandell, Sc.D. (University of Pennsylvania) Lyn Redwood, R.N., M.S.N. (Parent, Coalition for SafeMinds) Robert Ring, Ph.D. (Autism Speaks) Scott Michael Robertson, Ph.D. (Self advocate, Autistic Self Advocacy Network) John Elder Robison (Self advocate & Author) Alison Tepper Singer, M.B.A. (Parent, Autism Science Foundation)

10 IACC Core Values Sense of urgency Scientific excellence Spirit of cooperation Consumer focus Partnerships in action Accountability (SMART objectives specific, measurable, achievable, realistic, time-bound) Finding common ground

11 IACC Statutory Responsibilities Develop, annually update and submit to Congress a strategic plan for ASD research Develop and annually update a summary of advances in ASD research Monitor Federal activities with respect to ASD Make recommendations to the HHS Secretary regarding research or public participation Meet at least twice/year Under Autism CARES adding services

12 The IACC Strategic Plan for ASD Research Purpose: Focus, coordinate, and accelerate high quality research Answer the urgent questions consumer focused

13 IACC Strategic Plan for ASD Research Vision: The [IACC] Strategic Plan will accelerate and inspire research that will profoundly improve the health and well-being of every person on the autism spectrum across the lifespan. The Plan will set the standard for public-private coordination and community engagement. IACC Strategic Plan Introduction 2011

14 Research Questions Areas Covered in the IACC Plan 1) Screening and Diagnosis: When should I be concerned? 2) Underlying Biology: How can I understand what is happening? 3) Causes and Risk Factors: What caused this to happen and can this be prevented? 4) Treatments: Which treatments and interventions will help? 5) Services: Where can I turn for services? 6) Lifespan Issues: What does the future hold, particularly for adults? 7) Infrastructure, Data Sharing, & Surveillance: What other infrastructure and surveillance needs must be met? 78 Research Objectives

15 2013 IACC Strategic Plan Update Provides five-year update on progress toward IACC Strategic Plan goals Includes: These slides do not reflect decisions of the IACC and are for discussion purposes only. Portfolio analysis data for FY Funding allocated to each Objective of the IACC Strategic Plan Assessment of which objectives met, partially met, or did not meet recommended funding levels Assessment of: o Key research findings and progress o Remaining gaps in knowledge o Emerging needs and opportunities o Progress toward aspirational goals

16 IACC Strategic Plan Planning Group Findings $1.5 billion expended by federal and private research agencies and organizations from Advances were made in all 7 Strategic Plan question areas (screening and diagnosis, biology, risk factors, interventions, services, lifespan issues and infrastructure and surveillance Examples of advances include: Improvements in screening and diagnosis approaches, enabling diagnosis by age 24 months if fully utilized More data supporting the efficacy of early behavioral interventions Data from baby sibs and other studies helping us better understand the early development of ASD and its underlying biology More knowledge regarding both genetic and environmental risk factors New guidelines to help families and clinicians address comorbid/co-occurring conditions in individuals with ASD More knowledge about services barriers and outcomes

17 Overarching Goals to Accelerate Progress in the Next 5 Years Including individuals from the full range of ASD disability, all periods of the lifespan, and underserved populations, in research Moving from observational research (e.g., health disparities, services) to research to develop strategies to address issues Practice to research" - encouraging study of real-world practices to inform research studies Scaling up screening tools, interventions, and services approaches for use in community settings Developing a personalized medicine approach to intervention and services, using genotypes, subtypes/phenotypes, and comorbid health conditions Applying strategies from other fields to ASD research Leveraging existing infrastructure to increase research speed and efficiency Focusing research on practical outcomes, such effectiveness in community settings and improvement in quality of life Developing standardized outcomes measures

18 IACC Portfolio Analysis Assists the IACC in fulfilling the CAA requirement to monitor Federal activities related to Autism Spectrum Disorder (ASD) Provides comprehensive analysis of the ASD research portfolio across both Federal agencies and private organizations Informs the IACC and stakeholders about the funding landscape and current directions in ASD research Overview of 5 years of research, with funding and project information from , to help the IACC monitor progress in fulfilling each objective of the IACC Strategic Plan Highlights gaps and opportunities to guide future activities

19 2012 Federal and Private Autism Funding Total funding = $331,530, funders included Change since 2011 = + $32M Private Funding $71,545,146 22% 78% Federal Funding $259,985,755

20 2012 Federal and Private Autism Funders Funding Agency/Organization Number of Projects Total Funding National Institutes of Health (NIH) 452 $190,598,854 Simons Foundation (SF) 247 $56,494,115 Department of Education (ED) 141 $29,478,108 Centers for Disease Control and Prevention (CDC) 27 $17,214,124 Autism Speaks (AS) 183 $12,724,103 Health Resources and Services Administration (HRSA) 30 $9,400,983 National Science Foundation (NSF) 44 $6,539,622 Department of Defense - Autism Research Program (DoD- ARP) 76 $4,460,138 Department of Defense - Air Force (DoD-AF) 2 $903,888 Center for Autism and Related Disorders (CARD) 17 $583,940 Brain & Behavior Research Foundation (BBRF) 31 $569,427 Agency for Healthcare Research and Quality (AHRQ) 3 $490,038 Substance Abuse and Mental Health Services Administration (SAMHSA) 1 $450,000 Autism Science Foundation (ASF) 12 $385,000 Administration for Community Living (ACL) 1 $350,000 Southwest Autism Research & Resource Center (SARRC) 6 $300,000 Organization for Autism Research (OAR) 19 $273,182 Autism Research Institute (ARI) 14 $215,379 Administration for Children and Families (ACF) 1 $100,000 Centers for Medicare & Medicaid Services (CMS) 1 $0 Environmental Protection Agency (EPA) 1 $0 Grand Total 1,309 $331,530,901

21 Distribution of Funding Across the IACC Strategic Plan Questions (All Funders)? These slides do not reflect decisions of the IACC and are for discussion purposes only.

22 2013 IACC Summary of Advances These slides do not reflect decisions of the IACC and are for discussion purposes only. Annual publication required by CAA Lay-friendly summaries of the 20 most significant advances in ASD biomedical and services research selected by the IACC Covers: Prevalence Diagnosis Biology Risk factors Interventions Lifespan issues

23 IACC Statement on DSM-5 IACC issued a statement regarding the implications of changes in the ASD diagnostic criteria Addresses implications for: Research Practice and Policy Key points: Committee recommended research to further assess the reliability and validity of the DSM-5 ASD criteria, and to understand the potential impact of these new criteria on diagnosis, prevalence estimates, and access to services. "Services should be based on need rather than diagnosis; it would not be appropriate for a child to be denied ASD-specific services because he or she does not meet full DSM-5 criteria if a qualified clinician or educator determines that the child could benefit from those services."

24 Letter to Secretary on Health Coverage For Early Intervention Sent March 25, 2013 Key points: In light of the strengthening evidence base for the effectiveness of early interventions, the IACC recommends support for coverage of and broad access to these treatments for children diagnosed with ASD. Recommend availability of coverage of early behavioral interventions for children who are insured through private insurers as well as for those who are insured through Medicaid. Response received July 2, 2013 Letter and response on the IACC website under IACC Publications

25 Combating Autism Act Report to Congress (FY FY 2012) 100+ page report encompasses information on autism-related activities and programs (research and services) of agencies and offices within HHS, Department of Education, Environmental Protection Agency, Department of Defense, and National Science Foundation Released in February, 2014 and submitted to Congress per CARA These slides do not reflect decisions of the IACC and are for discussion purposes only. Available online at

26 What s next for the IACC? Previous committee s terms expired on September 30, 2014 Open Call for Nominations opened October 1, 2014 and closed on November 14, 2014 ~100 public member nominations received Secretary will select new public members; reappoint federal members to represent agencies New committee will be announced in 2015 and will begin meeting New committee will be charged with: o Updating the Strategic Plan, including adding new information on services o Continuing to monitoring federal activities, including both research and services ( to the extent practicable )

27 Susan Daniels, Ph.D., Director Dawn Beraud, Ph.D., Policy Analyst Emily Einstein, Ph.D., AAAS Science and Technology Policy Fellow Nicole Jones, Senior Web Developer Kipchumba Kitur, Operations Coordinator Stephanie Mok, Policy Analyst Lina Perez, Management Analyst

28 Thank you for attending today s AIR-P/ATN Advances in Autism Research & Care Webinar Series! Reminder: An evaluation will be sent to you via and its completion is required in order to receive CME Credit