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Portfolio Analysis Cover 2017-2018

Portfolio Analysis Report

IACC Autism Spectrum Disorder Research

2017-2018

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Appendices

Appendix A

Federal Agency and Private Organization Descriptions


Federal Agency and Private Organization Mission Statements

Federal Agencies – Department of Health and Human Services (HHS)

Administration for Community Living (ACL)

Formed in 2012, ACL serves as the Federal agency responsible for increasing access to community supports, while focusing attention and resources on the unique needs of older Americans and people with disabilities across the lifespan. ACL funds the AutismNOW web resource hosted by the Arc, which provides information for the ASD community on topics including detection, intervention, education, transition from high school into early adulthood, employment, advocacy, community inclusion, aging issues, and public policy.

Agency for Healthcare Research and Quality (AHRQ)

The mission of AHRQ is to improve the quality, safety, efficiency, and effectiveness of health care for all Americans. Their portfolio includes projects to evaluate the comparative effectiveness of autism interventions and to conduct systematic reviews of the literature on topics such as autism screening and autism interventions, with the goal of evaluating the strength of the evidence supporting practices and identifying gaps in research. AHRQ also funds projects aimed at disseminating information about best practices and other findings from their reviews to researchers, practitioners, the patient community, and other stakeholders.

Centers for Disease Control and Prevention (CDC)

The mission of CDC is to create the expertise, information, and tools that people and communities need to protect their health. This is achieved through health promotion, prevention of disease, injury and disability, and preparedness for new health threats. CDC’s autism research portfolio includes projects to collect data on ASD prevalence and risk factors, and projects to improve awareness, early detection, and intervention. CDC funds the Autism and Developmental Disabilities (ADDM) Network, a group of programs that aim to estimate the number of children with autism and other developmental disabilities living in different areas of the U.S. CDC also funds the Study to Explore Early Development (SEED), which is currently the largest study in the U.S. to help identify factors that may increase the probability of developing autism spectrum disorder and other developmental disabilities.

Health Resources and Services Administration (HRSA)

HRSA is the primary Federal agency for improving access to health care services for people who are uninsured, isolated, or medically vulnerable. The Maternal and Child Health Bureau (MCHB) supports autism-related programs through its Combating Autism Act Initiative (CAAI), including projects to increase awareness, reduce barriers to screening and diagnosis, promote the development of guidelines for evidence-based practices, and train health care professionals to provide screening as well as diagnostic and evidence-based early intervention. Flagship programs include the Autism Intervention Research Networks (AIR-B and AIR-P), the Developmental Behavioral Pediatrics Research Network (DBPNet), and the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program.

National Institutes of Health (NIH)

The mission of NIH is to seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life, and reduce illness and disability. The NIH supports a broad range of research on ASD, including projects on the basic neuroscience of ASD, risk factors, diagnosis, intervention, and services research. One of NIH’s flagship autism programs, the Autism Centers of Excellence (ACE) Program, funds a collection of research centers and networks across the country that conduct research on ASD. Since 2014, NIH has funded the ServASD initiative, which supports research to develop and test the effectiveness of service strategies to improve functional outcomes in early childhood, transition from youth to adulthood, and adulthood. NIH also funds interdisciplinary data repositories such as the National Database for Autism Research (NDAR) to facilitate the sharing of autism research data among scientists worldwide.


Federal Agencies – Other

Department of Defense (DoD)

The Department of Defense (DoD) is charged with coordinating and supervising all agencies and functions of the government concerned directly with national security and the U.S. Armed Forces. Within the DoD’s Army Defense Health Research Program, the Congressionally Directed Medical Research Program’s Autism Research Program (ARP) was established in 2007, with the mission to improve the lives of individuals with ASD by promoting innovative research that advances the understanding of ASD and leads to improved outcomes for those with ASD. The projects that the ARP funds span the scope of the IACC Strategic Plan. The U.S. Air Force (DoD-AF) also funds research on ASD and is developing a multidisciplinary autism research and services program for military families, part of which involves the creation of a comprehensive registry to provide higher quality data for autism clinical and genetics research.

Department of Education (ED)

The mission of the U.S. Department of Education is to promote student achievement by fostering educational excellence and ensuring equal access. The department funds a portfolio of ASD-related projects relating to development and delivery of educational interventions and services, particularly for children and transition-aged youth. A large portion of ED’s funding goes towards developing practitioner training as well as investment in training researchers.

Environmental Protection Agency (EPA)

The mission of the U.S. EPA is to protect human health and the environment. EPA co-funds the Center for Children's Environmental Health (CCEH) at the University of California at Davis with the National Institute of Environmental Health Sciences (NIEHS)/NIH, which conducts research into how environmental exposure to toxins might interact with a person’s genes and immune system to influence the probability and severity of ASD.

National Science Foundation (NSF)

NSF is an independent federal agency, formed by Congress to promote the progress of science and to advance the national health, prosperity, and welfare. NSF funds basic research in biology, mathematics, computer science, and the social sciences as well as technology development, but it does not focus on health or disease-related research. Although NSF does not have a program focused on ASD, it funds several projects that involve basic science or technologies with the potential to be applied to ASD in the future. NSF is a leading funder of projects involving technological interventions and supports, including robotics and virtual reality technologies that could be used to enhance daily living skills and activities of individuals with disabilities.


Private Organizations

Autism Research Institute (ARI)

ARI’s mission is to meet the needs of the global autism community through research, networking, education, and support for families and people of all ages on the autism spectrum. ARI is dedicated to developing a standard of care for individuals with autism spectrum disorders and their families and funds a range of research with a particular emphasis on the investigation of the biological underpinnings of autism, including immune and metabolic pathways.

Autism Science Foundation (ASF)

ASF’s mission is to support autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing, and disseminating autism research. The organization also provides information about autism to the general public and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism. ASF funds the Autism Sisters Project, which recruits unaffected sisters of individuals with autism to help researchers understand the female protective effect. ASF also supports the Baby Siblings Research Consortium, a network of researchers studying the earliest behavioral and biological features of ASD. In addition, ASF funds pre- and postdoctoral trainees to conduct basic and clinical research relevant to ASD, including studies focused on a wide range of topics such as identification of biomarkers, molecular and cellular mechanisms, genetic and environmental factors, treatments, and service delivery.

Autism Speaks (AS)

AS is the world's largest autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments, and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. AS funds a broad profile of ASD research ranging from basic neuroscience and the molecular causes of autism to implementation and testing of interventions for those diagnosed with autism. Autism Speaks supports the Autism Treatment Network, a collaboration of 14 specialty centers dedicated to providing families with state-of-the-art, multidisciplinary healthcare for children and teens affected by autism.

Brain & Behavior Research Foundation (BBRF)

BBRF funds basic neuroscience research to elucidate the molecular mechanisms underlying brain disorders and conditions. BBRF’s autism research portfolio primarily includes studies on the genetics and molecular mechanisms underlying autism.

Center for Autism and Related Disorders (CARD)

CARD is one of the world's largest organizations using applied behavior analysis (ABA) in the treatment of ASD and other related disorders. CARD’s research portfolio is centered around developing new behavioral interventions, assessing existing behavioral interventions, and developing and implementing training/intervention programs for individuals on the autism spectrum from birth to age 21.

Escher Fund for Autism/Escher Family Fund (EFA)

EFA is a donor advised fund at Schwab Charitable. Together with sister fund the Escher Family Fund of Silicon Valley Community Foundation, it promotes science education and spearheads research projects to examine disruptive germline programming and gametic effects of drug, smoking, and chemical exposures, with an emphasis on risk for ensuing abnormal neurodevelopment in offspring.

FRAXA Research Foundation (FRAXA)

FRAXA’s mission is to find effective treatments and ultimately a cure for Fragile X syndrome. The foundation directly funds research grants and fellowships at top universities around the world. It partners with biomedical and pharmaceutical companies, large and small, to bridge the gap between research discoveries and actual treatments. Fragile X syndrome is the leading known single gene cause of autism and FRAXA funds research projects that are related to understanding autistic features in Fragile X.

Geisinger Autism & Developmental Medicine Institute (GADMI)

GADMI is a transdisciplinary clinical and research institute and an international leader known for advancing the scientific understanding of developmental disorders. In partnership with families, their goal is to leverage new scientific discoveries to transform our understanding of the causes and treatments of these conditions. Their mission is to improve outcomes for individuals with developmental disorders and their families through increased access, accurate diagnosis, discovery of underlying causes, and development of targeted treatments.

New England Center for Children (NECC)

The New England Center for Children is a private, nonprofit autism research and education center dedicated to transforming the lives of children with autism worldwide through education, research, and technology. NECC strives to be a global leader in the provision of effective, evidence-based educational services for the millions of under-served children with autism and their families.

New Jersey Governor’s Council for Medical Research and Treatment of Autism (NJMRTA)

NJMRTA was created by state appropriation in 1999 and has been issuing research, clinical, and educational enhancement grants since 2000. The Council’s vision is to enhance the lives of individuals with ASD across their lifespans. The mission of the Council is to advance and disseminate the understanding, treatment, and management of ASD by means of a coordinated program of biomedical research, clinical innovation, and professional training in New Jersey.

Organization for Autism Research (OAR)

The mission of OAR is to support research that directly impacts the day-to-day quality of life of those with ASD. This includes research to inform and improve education, communication, self-care, social skills, employment, behavior, and adult and community living. In this context, it extends to issues related to family support, the efficacy of service delivery systems, and demographic analyses of the autism community.

Patient-Centered Outcomes Research Institute (PCORI)

PCORI helps people make informed healthcare decisions and improves healthcare delivery and outcomes by producing and promoting high-integrity, evidence-based information that comes from research guided by patients, caregivers, and the broader healthcare community.

Simons Foundation (SF)/Simons Foundation Autism Research Initiative (SFARI)

The mission of SF is to advance the frontiers of research in mathematics and the basic sciences. SF’s single largest initiative is SFARI, which seeks to improve the diagnosis and treatment of ASD by funding, catalyzing, and driving innovative research of the greatest quality and relevance. The SF ASD portfolio includes research on genetic and cellular factors underlying autism, identification of genetic and environmental risk factors, and development of potential treatments. Simons Foundation supports the Simons Simplex Collection, SPARK for autism, and Autism BrainNet, three major programs that conduct research and provide important research resources for the autism community.

Tuberous Sclerosis Alliance (TSA)

TSA is dedicated to finding a cure for tuberous sclerosis complex (TSC), while improving the lives of those affected. Serving as a leader in the rare disease community, their goals are to accelerate research, improve access and quality of care, support and empower constituents, educate and mobilize to increase investment, and build and strengthen organization. An estimated 40-50% of individuals with TSC have ASD, and it is a leading genetic cause of syndromic autism. TSA funds research that focuses on the connection between ASD and TSC.


Appendix B

Subcategory Definitions

Strategic Plan Question 1 and Associated research area

Diagnostic and screening tools

This subcategory includes projects that are developing new autism diagnostic and screening tests, as well as those establishing the usefulness of new or revised assessments for features of autism. It also encompasses projects aimed at improving early identification services and adapting clinical assessments into other languages for use in multi-lingual community settings and countries in addition to the U.S.

Early signs and biomarkers

Projects which use a variety of methods to search for signs of autism in very young children (generally under age 3) that could be used for diagnosis, such as eye-tracking, physiological measures, and autism-specific behavioral patterns are included in this subcategory. More examples include projects investigating metabolic measures, such as the levels of specific chemicals, hormones, or proteins in the blood that could be used as biomarkers of the disorder.

Intermediate phenotypes/Subgroups

Included in this subcategory are projects aimed at identifying distinct subgroups of people with autism, or those that share common morphological, physiological, or behavioral features. Projects in this subcategory use a variety of methods to identify and distinguish these groups.

Symptomology

These projects seek to define the broad range and severity of autism characteristics, including both biological and behavioral features. Among these studies are some that examine how children and adults with autism vary in their development of social communication and language. Other projects seek to understand the emergence of problem behaviors and how neurocognitive differences can contribute to developmental and phenotypic variability in those with an autism diagnosis.

Strategic Plan Question 2 and Associated research area

Cognitive studies

These are studies of psychological and mental processes, including memory, producing and understanding language, solving problems, and making decisions. Projects in this subcategory consist of those that investigate theory of mind, social cognition and empathy, understanding facial expressions of emotion (and how and why this is impaired in ASD), and recall and memory.

Computational science

Computational methods and modeling allow for the synthesis and study of large and complex sets of data. Some projects in this subcategory collect extensive experimental biological and behavioral data and use powerful computing techniques to reveal new insights. Other aspects of computer science are also included, such as developing statistical modeling techniques to better understand the biology of autism.

Co-occurring conditions

Research on conditions that often co-occur with ASD is included here, such as seizures/epilepsy, sleep disorders, gastrointestinal dysfunction, wandering/elopement behavior, attention deficit hyperactivity disorder (ADHD), and familial autoimmune disorders.

Developmental trajectory

Projects in this subcategory often include longitudinal studies following various aspects of biological and behavioral development in the same individuals over time. Examples include brain growth, face processing, change in neural connectivity over time, and development of communication skills and language processing. These studies often compare children with ASD to typically developing children or to their unaffected siblings.

Immune/Metabolic pathways

These projects focus on understanding the biological mechanisms of metabolism and the immune system that may be altered in autism, typically in cells and animal models. This largely includes studies on inflammation and inflammatory molecules (i.e., cytokines), as well as on the role of mitochondria, energy metabolism, and oxidative stress. Also included in this group are projects seeking to identify specific immune and metabolic mechanisms underlying specific triggers in early prenatal and post-natal life, such as maternal infection, maternal auto-antibodies, and toxic exposures.

Molecular pathways

This subcategory includes studies on specific molecules and proteins (other than the immune and metabolic systems) that may be involved in the development of ASD and related genetic disorders (e.g., fragile X syndrome and Rett syndrome). Many of these projects use animal and cellular models to explore the biological effects of specific candidate genes and to identify common molecular pathways, including alterations in synaptic functioning and intracellular signaling cascades.

Neural systems

Studies in this subcategory explore the structure and activity of the brain and underlying neural systems involved in autism, including functional connections between brain regions. Many projects seek to identify the precise neural networks underlying communication and language processing, social interactions, and behavioral issues. These studies frequently employ imaging techniques, such as functional magnetic resonance imaging (fMRI) and diffusion tensor imaging (DTI), and other physiological measures of brain activity, such as electroencephalography (EEG).

Neuropathology

These projects typically include post-mortem examination of brain tissue from ASD individuals. Many of the studies in this subcategory explore how the architecture of the brain may be altered in individuals with autism or how gene expression varies in different areas of the brain.

Sensory and motor function

Projects in this subcategory explore the neural underpinnings of motor skills and abilities in children with ASD and assess visual, auditory, and other sensory processes in the brain.

Subgroups/Biosignatures

Because there is so much heterogeneity among individuals with autism, research to understand how certain subgroups of individuals that share certain behavioral or biological characteristics could help understand some of the underlying biology in ASD. This can be done by searching for certain biological factors (“signatures”), such as hormone levels or structural abnormalities in the brain, that define a particular subgroup. Many of these projects try to make the connection between certain genes with a known or suspected link to autism and the observable characteristic, or phenotype, that they cause.

Strategic Plan Question 3 and Associated research area

Environmental Risk factors

This subcategory includes a number of projects investigating potential environmental factors that may contribute to the development of autism. Example projects include studies of the effects of the microbiome, environmental contaminants and toxins, maternal dietary factors, medications taken during pregnancy or to induce labor, assistive reproductive treatments, child and maternal response to immune challenge, and registries where many of these factors can be tracked simultaneously.

Epigenetics

Epigenetics is the study of heritable changes in gene function that occur without a change in the DNA sequence (such as methylation of DNA). Environmental factors can cause these changes in gene expression, and projects in this subcategory seek to identify some of the environmental influences that may lead to these epigenetic changes.

Gene-Environment

These studies include efforts to identify and understand the contributions of environmental factors, genetic susceptibility, and human physiology (e.g., the immune system, metabolic processes) that may increase the probability of developing ASD, as well as studies that directly examine gene-environment interactions. (Note: While epigenetic studies are a subset of gene-environment studies, they are tracked as a separate subcategory because there is a substantial number of these projects and the topic of epigenetics is of significant public interest.)

Genetic risk factors

Projects in this subcategory seek to identify new genes that are implicated in higher probability of developing ASD or to better understand genetic factors that were previously identified.

Strategic Plan Question 4 and Associated research area

Behavioral

Projects in this subcategory involve a wide array of behavioral research and training methods, including applied behavior analysis (ABA), cognitive-behavioral therapy, discrete trial training, Early Start Denver Model, imitation training, joint attention training, Lovaas method, pivotal response training, sibling-mediated interventions, and social skills training. Projects in this subcategory may include research focused on the outcome measures of behavioral interventions.

Complementary, dietary, and alternative

This subcategory includes research on acupressure; acupuncture; antioxidants; cholesterol supplementation; glutathione metabolism; nutritional supplements, vitamins, and minerals; probiotics; and special diets (e.g., gluten-free, casein-free).

Educational

Nearly all research in classroom settings falls under this subcategory, including curricula, educational best practices, inclusive education programs, math and reading training, positive behavioral supports, special education programs, TEACCH (Treatment and Education of Autistic and Related Communication-Handicapped Children), and the “Social Stories” approach. Projects in this subcategory may include research focused on the outcome measures of educational interventions.

Medical/Pharmacologic

This subcategory includes research on drugs (e.g., anti-depressants, anticonvulsants, antipsychotics, anxiolytics, melatonin, and stimulants) to treat autism and its co-occurring conditions, as well as medical therapies such as transcranial magnetic stimulation (TMS).

Model systems/Therapeutic targets

Animal models mimicking behaviors of ASD and those that are being used to develop or test new drug treatments, as well as cell lines used to discover new drug targets or to screen potential drug candidates, are included in this subcategory.

Occupational, physical, and sensory-based

Therapies in this subcategory encompass art therapy, motor training (including fine motor skills such as handwriting as well as gross motor training involving and posture), music therapy, occupational therapy, pet (animal) therapy, physical activity plans and exercise therapy (bike riding, swimming), physical therapy, sensory integration, therapeutic horseback riding, training in self-care and daily living skills, and vocational rehabilitation.

Technology-based interventions and supports

Augmentative and alternative communication (AAC), computer applications and software, picture exchange communication system (PECS), social robots, teleconferencing, video modeling and virtual reality (including virtual and 3D environments to mimic social situations), and wearable sensors are all examples of the types of technology in the projects in this subcategory. Projects in this subcategory may include research focused on the outcome measures of technology-based interventions.

Strategic Plan Question 5 and Associated research area

Community inclusion programs

These programs provide instruction in social, communication, and leisure skills to enable individuals with autism to participate in sports, recreation, and social-integration activities in fully integrated settings and to build successful relationships with others.

Efficacious and cost-effective service delivery

This subcategory includes programs involving web-based curricula and interventions as well as telehealth methodology, all of which could benefit those in underserved areas. Various parent training projects (to deliver a behavioral therapy, for example) using web-based methods such as teleconsultation and video feedback make distributing the training programs cost-effective and accessible across the country. Studies to improve dental care are also in this subcategory for effective service delivery.

Family well-being and safety

Studies in this subcategory evaluate issues of caregiver stress and measures of quality of life for individuals with ASD and their families, as well as assess programs to help parents navigate the service system after their child receives an ASD diagnosis. It also surveys safety issues for those with autism, including wandering and bullying.

Practitioner training

Projects in this subcategory seek to increase skill levels in service providers, including medical providers, direct support workers, parents and legal guardians, education staff, and public service workers.

Services utilization and access

These projects include surveys of service systems available in different states, evaluations of patterns of medical service use among children with autism, a comprehensive online resource for autism services, and specific efforts in several states to coordinate services for people with autism. They also evaluate disparities in diagnosis and service utilization as well as barriers to access for racial and ethnic minorities.

Strategic Plan Question 6 and Associated research area

Although Question 6 is still the research area with the smallest proportion of research funding, in recent years there has been an increase in funding and project counts aligned with lifespan issues. Based on the increase in projects and discussions at IACC meetings, OARC developed Question 6 subcategory coding for the 2017-2018 IACC Portfolio Analysis Report. While many Question 6 topics tend to cover more than one research topic, projects were assigned to one subcategory code that aligned most with the project’s goals. The five new Question 6 subcategories are:

Community integration supports and services

This subcategory includes projects that enhance community services to increase inclusion and develop interventions and supports to improve community involvement among transition-age youth and adults on the autism spectrum; this category will also include any sibling and caregiver engagement services and interventions.

Health and behavioral outcomes

Projects in this subcategory focus on understanding and improving health-related outcomes for youth and adults, including treatment of core features and co-occurring conditions, behavioral outcomes, and other longitudinal studies.

Improving healthcare systems/Healthcare transitions

These projects are focused on efforts to improve provider-patient experiences and interactions across the lifespan; this category includes screening and diagnostic tools focused on youth and adults (not solely ASD-specific tools).

Daily life skills

Research in this subcategory focuses on independent living skills instruction (e.g., executive function, self-determination, goal setting) for youth and adults with ASD.

Transition to adulthood and post-secondary outcomes

These projects focus on services, tools, and interventions that are helpful to youth making the transition out of high school. Often, these focus on education and employment. This category also focuses on young adulthood and projects that support post-secondary outcomes such as college experiences, employment, and quality of life outcomes.

Strategic Plan Question 7 and Associated research area

Biobanks

A biobank is a type of biorepository which stores human biological samples for use in research. Projects in this subcategory support collection of DNA and tissue samples from autism patients.

Data tools

These projects include bioinformatics databases to store genetic, phenotypic, and other medical information from autism patients. They also support infrastructure for several of these major databases to interact, as well as dissemination of data to the community and stakeholders.

Research infrastructure

This subcategory includes coordinating centers that support multiple research projects by running tests, analyzing data, providing statistical analyses, and disseminating research to the community. These projects also support facilities that operate large, shared instruments used by several scientists to test research samples.

Research recruitment and clinical care

Projects in this subcategory help increase participation in research studies and conduct medical evaluations for the participants, often collecting data that can be used for multiple studies.

Research workforce development

Workshops, conferences, and training programs that serve to expand the research workforce, enhance interdisciplinary research training, and recruit early-career scientists into the ASD field are included in this subcategory.

Surveillance and prevalence studies

Research that measures autism prevalence in the U.S. and internationally is contained in this subcategory, including the Autism and Developmental Disabilities Monitoring (ADDM) Network sites maintained by the Centers for Disease Control and Prevention (CDC).


Appendix C

ASD-Related Research Projects not Included in the IACC Portfolio Analysis

In previous IACC Portfolio Analysis Reports, an appendix on ASD-related research projects has been included as reference material for stakeholders, researchers, and funders. This lists projects that are not specifically focused on autism but may be helpful in understanding the broader landscape of ongoing research on disabilities and other topics that may be relevant to autism. When the 2017 and 2018 portfolio data were collected, this list had grown to include hundreds of projects. In an effort to keep the published IACC Portfolio Analysis Reports concise, this list of projects is now available on our website at the following link and QR code. If you are interested in viewing the list of ASD-related research projects for 2017 and 2018, please visit the webpage below.

Direct link to ASD-Related Research Projects: https://iacc.hhs.gov/publications/portfolio-analysis/2018/asd-related-projects.shtml

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IACC LogoAbout the IACC

The Interagency Autism Coordinating Committee (IACC) is a federal advisory committee charged with coordinating federal activities concerning autism spectrum disorder (ASD) and providing advice to the Secretary of Health and Human Services (HHS) on issues related to autism. The Committee was established by Congress under the Children’s Health Act of 2000, reconstituted under the Combating Autism Act (CAA) of 2006, and renewed most recently under the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2019.

Membership of the Committee includes a wide array of federal agencies involved in ASD research and services, as well as public stakeholders, including self-advocates, family members of children and adults with ASD, advocates, service providers, and researchers, who represent a variety of perspectives from within the autism community. The IACC membership is composed to ensure that the Committee is equipped to address the wide range of issues and challenges faced by individuals and families affected by autism.

Under the CAA and subsequent authorizations, the IACC is required to (1) develop and annually update a strategic plan for ASD research, (2) develop and annually update a summary of advances in ASD research, and (3) monitor federal activities related to ASD.

Through these and other activities, the IACC provides guidance and recommendations to HHS and partners with other federal departments, federal agencies, research and advocacy organizations, and the broader autism community to accelerate research and enhance services with the goal of profoundly improving the lives of people with ASD and their families.

For more information about the IACC, see https://iacc.hhs.gov/

Interagency Autism Coordinating Committee Member Roster

Chair

  • Joshua Gordon, M.D., Ph.D. Director National Institute of Mental Health National Institutes of Health Bethesda, MD

Federal Members

  • Melinda Baldwin, Ph.D. Child Welfare Program Specialist Children’s Bureau Administration on Children, Youth, and Families Administration for Children and Families Washington, DC
  • Diana W. Bianchi, M.D. Director Eunice Kennedy Shriver National Institute of Child Health and Human Development National Institutes of Health Bethesda, MD
  • Linda S. Birnbaum, Ph.D., D.A.B.T., A.T.S. Director National Institute of Environmental Health Sciences and National Toxicology Program National Institutes of Health Research Triangle Park, NC
  • Francis S. Collins, M.D., Ph.D. Director National Institutes of Health Bethesda, MD
  • Judith A. Cooper, Ph.D. Deputy Director National Institute on Deafness and Other Communication Disorders National Institutes of Health Bethesda, MD
  • Elaine Cohen Hubal, Ph.D. (alternate) Senior Science Advisor Office of Research and Development National Exposure Research Laboratory Environmental Protection Agency Washington, DC
  • Tiffany R. Farchione, M.D. Deputy Director Division of Psychiatry Products U.S. Food and Drug Administration Silver Spring, MD
  • Melissa L. Harris Acting Deputy Director Disabled and Elderly Health Programs Group Center for Medicare and CHIP Services Centers for Medicare and Medicaid Services Baltimore, MD
  • Jennifer Johnson, Ed.D Deputy Director, Administration on Intellectual and Developmental Disabilities Administration for Community Living Washington, DC
  • Laura Kavanagh, M.P.P. Deputy Associate Administrator Maternal and Child Health Bureau Health Resources and Services Administration Rockville, MD
  • Walter J. Koroshetz, M.D. Director National Institute of Neurological Disorders and Stroke National Institutes of Health Bethesda, MD
  • Laura Pincock, Pharm.D., M.P.H Pharmacist Officer Agency for Healthcare Research and Quality Rockville, MD
  • Marcella Ronyak, Ph.D., L.C.S.W., C.D.P. Director Division of Clinical & Community Services Indian Health Service Headquarters Rockville, MD
  • Stuart K. Shapira, M.D., Ph.D. Associate Director for Science and Chief Medical Officer National Center on Birth Defects and Developmental Disabilities Centers for Disease Control and Prevention Atlanta, GA
  • Cheryl Williams Director, Office of Medical Policy Office of Disability Policy Social Security Administration Baltimore, MD
  • Larry Wexler, Ed.D. Director Research to Practice Office of Special Education Programs U.S. Department of Education Washington, DC
  • Nicole Williams, Ph.D. Program Manager Congressionally Directed Medical Research Programs U.S. Department of Defense Frederick, MD

Public Members

  • David Amaral, Ph.D. Distinguished Professor Department of Psychiatry & Behavioral Science University of California, Davis (UC) Research Director UC Davis MIND Institute Sacramento, CA
  • James Ball, Ed.D., B.C.B.A.-D. President and CEO JB Autism Consulting Cranbury, NJ
  • Samantha Crane, J.D. Legal Director and Director of Public Policy Autistic Self Advocacy Network Washington, DC
  • Geraldine Dawson, Ph.D. Professor Department of Psychiatry and Behavioral Sciences Duke University School of Medicine Director Duke Center for Autism and Brain Development Durham, NC
  • David S. Mandell, Sc.D. Director Center for Mental Health Policy and Services Research Associate Professor Psychiatry and Pediatrics Perelman School of Medicine University of Pennsylvania Philadelphia, PA
  • Kevin Pelphrey, Ph.D. Harrison-Wood Jefferson Scholars Foundation Professor of Neurology & Professor Curry School of Education University of Virginia
  • Edlyn Peña, Ph.D. Associate Professor of Educational Leadership Director of Doctoral Studies California Lutheran University Thousand Oaks, CA
  • Louis Reichardt, Ph.D. Director Simons Foundation Autism Research Initiative New York, NY
  • Robert H. Ring, Ph.D. Chief Executive Officer Kaerus Bioscience Newtown, PA
  • John Elder Robison Neurodiversity Scholar in Residence College of William and Mary Amherst, MA
  • Alison Tepper Singer, M.B.A. President Autism Science Foundation Scarsdale, NY
  • Julie Lounds Taylor, Ph.D. Assistant Professor of Pediatrics Investigator, Vanderbilt Kennedy Center Vanderbilt University Medical Center Nashville, TN
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National Institute of Mental Health
National Institutes of Health
Email: IACCPublicInquiries@mail.nih.gov
Website: https://iacc.hhs.gov

Office of Autism Research Coordination Staff Roster

  • Susan Daniels, Ph.D. Director
  • Oni Celestin, Ph.D. Science Policy Analyst
  • Katrina Ferrara, Ph.D. Science Policy Analyst
  • Tianlu Ma, Ph.D. Science Policy Analyst
  • Rebecca Martin, M.P.H. Public Health Analyst
  • Angelice Mitrakas, B.A. Management Analyst
  • Julianna Rava, M.P.H. Science Policy Analyst
  • Matthew Vilnit, M.B.A. Operations Coordinator
  • Jeffrey Wiegand, B.S. Web Development Manager

Cover Design
Medical Arts Branch, Office of Research Services, National Institutes of Health

Copyright Information
All material appearing in this report is in the public domain and may be reproduced or copied. A suggested citation follows.

Suggested Citation
Interagency Autism Coordinating Committee (IACC). 2017-2018 IACC Autism Spectrum Disorder Research Portfolio Analysis Report. April 2021. Retrieved from the U.S. Department of Health and Human Services Interagency Autism Coordinating Committee website: https://iacc.hhs.gov/publications/portfolio-analysis/2018/.

Appendices

 
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