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.
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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
These slides do not reflect decisions of the IACC and are for discussion purposes only.
The IACC Strategic Plan for ASD Research
Purpose:
• Focus, coordinate, and accelerate high quality research
• Answer the urgent questions – consumer focused
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
These slides do not reflect decisions of the IACC and are for discussion purposes only.
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
2013 IACC Strategic Plan Update
Provides five-year update on progress
toward IACC Strategic Plan goals
Includes:
Portfolio analysis data for FY 2008-
2012
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
These slides do not reflect decisions of the IACC
and are for discussion purposes only.
These slides do not reflect decisions of the IACC and are for discussion purposes only.
IACC Strategic Plan Planning Group Findings
• $1.5 billion expended by federal and private research agencies
and organizations from 2008-2012
• 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
These slides do not reflect decisions of the IACC and are for discussion purposes only.
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 co-
morbid 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
2011-2012 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 2008-2012, to help the IACC monitor progress in fulfilling each objective of the IACC Strategic Plan
Highlights gaps and opportunities to guide future activities
These slides do not reflect decisions of the IACC and are for discussion purposes only.
Federal Funding $259,985,755
Private Funding $71,545,146
22%
2012 Federal and Private Autism Funding
These slides do not reflect decisions of the IACC and are for discussion purposes only.
Total funding = $331,530,901
21 funders included
Change since 2011 = + $32M
78%
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
These slides do not reflect decisions of the IACC and are for discussion purposes only.
2012 Federal and Private Autism Funders
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.
2013 IACC Summary of
Advances
• 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
These slides do not reflect decisions of the IACC
and are for discussion purposes only.
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