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Portfolio Analysis Cover 2015
Portfolio Analysis Report
IACC Autism Spectrum Disorder Research
2014-2015
Appendices

Appendix A

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, 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.

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 early, evidence-based 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 the flagship autism programs funded by NIH, the Autism Centers of Excellence (ACE), is a collection of research centers and networks across the country that conduct research on ASD. 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 United States Armed Forces. Within the DoD’s 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.

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 risk 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 work with a particular emphasis on 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 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 risk 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 newbehavioral interventions, assessing existing behavioral interventions, and developing and implementing training/intervention programs for individuals on the autism spectrum from birth to age 21.

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.

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, andtechnology. 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.

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 the Simons Foundation Autism Research Initiative (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.


Appendix B

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

This section contains lists of 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.

Funder Principal Investigator(s) Project Title Weblink / Project Description

Funder

NECC

Principal Investigator(s)

Chata Dickson, Jackie MacDonald,
Kelly McConnell

Project Title

Evaluating the performance of typically developing children on the New England Center for Children's Core Skills Assessment

Weblink / Project Description

The purpose of this study was to evaluate the performance of typically developing children on the NECC Core Skills Assessment (CSA). These results will provide a normative reference to those looking to teach skills to young children diagnosed with autism.

Funder

NECC

Principal Investigator(s)

Chata Dickson, Kim Walter

Project Title

Effects of task difficulty on behavioral resurgence

Weblink / Project Description

In this translational study of effects of task difficulty on resurgence, we evaluated rate of responding following reinforcement and extinction of two different responses. This study will be replicated with individuals with autism serving as participants.

Funder

ACL

Principal Investigator(s)

Thomas Keating, PhD

Project Title

MyLife: Development of a Cloud-Based Transition ePortfolio for Individuals with Cognitive Disabilities

Weblink / Project Description

http://www.naric.com/?q=ProgramDatabase

Funder

ACL

Principal Investigator(s)

Sandra M. Magaña, PhD, Tamar Heller, PhD, Joe Caldwell, PhD

Project Title

Rehabilitation Research and Training, Center (RRTC) on Family Support

Weblink / Project Description

http://www.naric.com/?q=ProgramDatabase

Funder

ACL

Principal Investigator(s)

Daniel K. Davies

Project Title

Mobile Connect: A Cloud-Based, Universally Designed Text Messaging and Email Program to Facilitate Social Connectedness and Community Inclusion for Individuals with Intellectual Disabilities

Weblink / Project Description

http://www.naric.com/?q=ProgramDatabase

Funder

HRSA

Principal Investigator(s)

Stephen Sulkes

Project Title

Leadership Education in Neurodevelopmental and Related Disabilities (LEND)

Weblink / Project Description

https://mchdata.hrsa.gov/dgisreports/Abstract/AbstractDetails.aspx?cbAbstractSummary=T73MC00029_2015_NonResearch_4

Funder

NIH

Principal Investigator(s)

Didier Hodzic

Project Title

Nuclear Dynamics in Retinal Development Homeostasis

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?aid=8826128&icde=29944362&ddparam=&ddvalue=&ddsub-=&cr=1&csb=default&cs=ASC

Funder

NIH

Principal Investigator(s)

David Cobrinik

Project Title

Modeling Optic Nerve Hypoplasia with Patient iPSCDerived Retinal Ganglion Cells

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?projectnumber=5R21EY025419-02

Funder

NIH

Principal Investigator(s)

Martina Brueckner

Project Title

Genetics and Genomics of Congenital Heart Diseases and Associated Neurodevelopmental Abnormalities

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?aid=8952979

Funder

NIH

Principal Investigator(s)

Jane W. Newburger

Project Title

The Genomic Basis of Congenital Heart Disease and Neurodevelopmental Outcomes

Weblink / Project Description

http://projectreporter.nih.gov/project_info_description.cfm?aid=8952616

Funder

NIH

Principal Investigator(s)

Deepak Srivastava

Project Title

Genetics of Hypoplastic Left Heart Syndrome

Weblink / Project Description

http://projectreporter.nih.gov/project_info_description.cfm?aid=8952652

Funder

NIH

Principal Investigator(s)

Martin Tristani-Firouzi

Project Title

Bridging the Gap Between Genomics and Clinical Outcomes in CHD

Weblink / Project Description

http://projectreporter.nih.gov/project_info_description.cfm?aid=8950472

Funder

NIH

Principal Investigator(s)

Paul Thompson

Project Title

ENIGMA Center for Worldwide Medicine, Imaging & Genomics - Adminstrative

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?aid=8935792&icde=0

Funder

NIH

Principal Investigator(s)

Paul Thompson

Project Title

ENIGMA Center for Worldwide Medicine, Imaging & Genomics - Consortium Activities

Weblink / Project Description

http://projectreporter.nih.gov/project_info_description.cfm?projectnumber=5U54EB020403-02

Funder

NIH

Principal Investigator(s)

Paul Thompson

Project Title

ENIGMA Center for Worldwide Medicine, Imaging & Genomics - Data Science research

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?aid=8935792&icde=0

Funder

NIH

Principal Investigator(s)

Paul Thompson

Project Title

ENIGMA Center for Worldwide Medicine, Imaging & Genomics - Training

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?aid=8935792&icde=0

Funder

NIH

Principal Investigator(s)

Marji Warfield

Project Title

The impact of parental military deployment on children with disabilities

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?aid=8881255&icde=0

Funder

NIH

Principal Investigator(s)

Michael Guralnick

Project Title

Intellectual and Developmental Disabilities Research Center

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?projectnumber=5U54HD083091-02

Funder

NIH

Principal Investigator(s)

Gail Mandel

Project Title

The Mechanism of Rett Syndrome Rescue by Astrocytes

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?projectnumber=1R01HD081037-01A1

Funder

NIH

Principal Investigator(s)

Gary J. Latham

Project Title

Development of a Reliable and Standardized Molecular Assay for Fragile X Protein

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?projectnumber=1R43HD082900-01A1

Funder

NIH

Principal Investigator(s)

Marsha Ruth Mailick

Project Title

FMRI1 Premutation Phenotypes in Population-Based & Clinically-Ascertained Samples

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?projectnumber=1R01HD082110-01A1

Funder

NIH

Principal Investigator(s)

Joseph E. Donnelly

Project Title

Weight Management for Adolescents with IDD

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?projectnumber=1R01HD079642-01A1%5C

Funder

NIH

Principal Investigator(s)

Hongjie Yuan

Project Title

NMDAR Mutations & Neurodevelopmental Disorder: From Mechanism to Targeted Therapy

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?projectnumber=1R01HD082373-01

Funder

NIH

Principal Investigator(s)

Jonathan Oren Lipton

Project Title

Sleep and Circadian Rhythms in Tuberous Sclerosis Complex

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?projectnumber=5K08HD071026-04

Funder

NIH

Principal Investigator(s)

Jennifer C. Darnell

Project Title

Cell-specific RNA Targets of the Fragile X Mental Retardation Protein Family

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?projectnumber=5R01HD040647-12

Funder

NIH

Principal Investigator(s)

Paul J Hagerman

Project Title

Expression of the Fragile X Gene

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?projectnumber=5R01HD040661-13

Funder

NIH

Principal Investigator(s)

Carlos Portera-Cailliau

Project Title

Imaging Dendritic Spine Abnormalities and Circuit Defects in Fragile X Mice

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?projectnumber=5R01HD054453-07

Funder

NIH

Principal Investigator(s)

Lee-Way Jin

Project Title

The Role of Astrocytes in Rett Syndrome

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?projectnumber=5R01HD064817-05

Funder

NIH

Principal Investigator(s)

Carolyn R Houser

Project Title

GABA System Alterations and Fragile X Syndrome

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?projectnumber=5R01HD067225-04

Funder

NIH

Principal Investigator(s)

Frederick T Chin

Project Title

Cross-Species Multi-Modal Neuroimaging to Investigate GABA Physiology in Fragile X Syndrome

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?projectnumber=5R01HD084214-02

Funder

NIH

Principal Investigator(s)

Lu Chen

Project Title

Developmental Pathophysiology of Synapses in a Mouse Model of Fragile X Syndrome

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?projectnumber=5R01HD084215-02

Funder

NIH

Principal Investigator(s)

Alan Kenneth Percy

Project Title

Rett Syndrome; MECP2 Duplications; And Rett-Related Disorders Natural History

Weblink / Project Description

http://projectreporter.nih.gov/project_info_description.cfm?projectnumber=5U54HD061222-12

Funder

NIH

Principal Investigator(s)

Alan Kenneth Percy

Project Title

MECP2 Duplication Syndrome: Longitudinal Studies; Biomarker and Clinical Outcome Development

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?projectnumber=5U54HD061222-12

Funder

NIH

Principal Investigator(s)

Alan Kenneth Percy

Project Title

Rett-Related Disorders: Longitudinal Studies; Biomarker and Clinical Outcome Development

Weblink / Project Description

http://projectreporter.nih.gov/project_info_description.cfm?projectnumber=5U54HD061222-12

Funder

NIH

Principal Investigator(s)

Alan Kenneth Percy

Project Title

Development of a Behavioral Outcome Measure for Rett Syndrome (RETTBE) and Metabolic Profiling of Rett Syndrome; MECP2 Duplication Syndrome; and Rett-Related Disorders

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?projectnumber=5U54HD061222-12

Funder

NIH

Principal Investigator(s)

Kimberly Huber

Project Title

Mechanisms of Neocortical and Sensory Hyperexcitability in Fragile X Syndrome

Weblink / Project Description

http://projectreporter.nih.gov/project_info_description.cfm?projectnumber=5U54HD082008-02

Funder

NIH

Principal Investigator(s)

Kimberly Huber

Project Title

Molecular and Synaptic Mechanisms of Auditory Circuit Dysfunction in FXS Mice

Weblink / Project Description

http://projectreporter.nih.gov/project_info_description.cfm?projectnumber=5U54HD082008-02

Funder

NIH

Principal Investigator(s)

Kimberly Huber

Project Title

Auditory Processing Deficits in FMR1 KO Mice

Weblink / Project Description

http://projectreporter.nih.gov/project_info_description.cfm?projectnumber=5U54HD082008-02

Funder

NIH

Principal Investigator(s)

Kimberly Huber

Project Title

Neurophysiological and Acute Pharmacological Studies in FXS Patients

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?projectnumber=5U54HD082008-02

Funder

NIH

Principal Investigator(s)

Joel D. Richter

Project Title

Rescuing the Fragile X Syndrome by CPEB Depletion

Weblink / Project Description

http://projectreporter.nih.gov/project_info_description.cfm?projectnumber=5U54HD082013-02

Funder

NIH

Principal Investigator(s)

Joel D. Richter

Project Title

Strategies to Rescue PI3K Dysregulation in Fragile X Syndrome

Weblink / Project Description

http://projectreporter.nih.gov/project_info_description.cfm?projectnumber=5U54HD082013-02

Funder

NIH

Principal Investigator(s)

Joel D. Richter

Project Title

Rescuing Fragile X Syndrome by Targeting P70 S6 Kinase 1

Weblink / Project Description

http://projectreporter.nih.gov/project_info_description.cfm?projectnumber=5U54HD082013-02

Funder

NIH

Principal Investigator(s)

Susan Y Bookheimer

Project Title

Intellectual and Developmental Disabilities Research Centers

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?projectnumber=5P30HD004612-44

Funder

NIH

Principal Investigator(s)

Jeffrey L. Neul

Project Title

Characterization of Autonomic Dysfunction in Rett Syndrome & Other MECP2 Disorder

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?projectnumber=5R01HD062553-05

Funder

NIH

Principal Investigator(s)

Scott S. Hall

Project Title

Understanding Severe Disruptive Behaviors in Adolescents with Fragile X Syndrome

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?projectnumber=5R21HD072282-02

Funder

NIH

Principal Investigator(s)

Lisa D. Marceau

Project Title

Improving Pediatric Developmental Screening and Communication: A CME

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?projectnumber=5R44HD063173-03

Funder

NIH

Principal Investigator(s)

Leonard Abbeduto

Project Title

Expressive Language Sampling as an Outcome Measure

Weblink / Project Description

http://projectreporter.nih.gov/project_info_details.cfm?aid=8627630

Funder

NIH

Principal Investigator(s)

Mary Oschwald

Project Title

Pregnancy and Support Services for Women with Developmental Disabilities

Weblink / Project Description

http://projectreporter.nih.gov/project_info_details.cfm?aid=8700656

Funder

NIH

Principal Investigator(s)

Lin L. Zhu

Project Title

Using FMRI to Understand Verbal and Nonverbal Human Communication

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?projectnumber=1F30DC014911-01A1

Funder

NIH

Principal Investigator(s)

Karen P. Usdin

Project Title

Gene Silencing in Fragile X Syndrome

Weblink / Project Description

http://projectreporter.nih.gov/project_info_description.cfm?projectnumber=1ZIADK057602-19

Funder

NIH

Principal Investigator(s)

Karen P. Usdin

Project Title

Mechanism of Repeat Expansion and Chromosome Fragility in Fragile X Syndrome

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?projectnumber=1ZIADK057808-09

Funder

NIH

Principal Investigator(s)

Jane Yu

Project Title

Prostaglandin Biosynthesis: A Novel Therapeutic Target in TSC Disorders

Weblink / Project Description

http://projectreporter.nih.gov/project_info_description.cfm?projectnumber=7R01DK098331-02

Funder

NIH

Principal Investigator(s)

Carmen Joseph Marsit

Project Title

Environment; Imprinting; and Neurodevelopment

Weblink / Project Description

http://projectreporter.nih.gov/project_info_description.cfm?projectnumber=3R01ES022223-03S1

Funder

NIH

Principal Investigator(s)

Carmen Joseph Marsit

Project Title

Environment; Imprinting; and Neurodevelopment

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?projectnumber=5R01ES022223-03

Funder

NIH

Principal Investigator(s)

Paul J. Hagerman

Project Title

Epigenetic Regulation of the FMR1 Gene

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?projectnumber=1R01GM113929-01

Funder

NIH

Principal Investigator(s)

James F. Gusella

Project Title

Neurodevelopmental Loci

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?projectnumber=2P01GM061354-11A1

Funder

NIH

Principal Investigator(s)

Olga, Troyanskaya

Project Title

Integration and Visualization of Diverse Biological Data

Weblink / Project Description

http://projectreporter.nih.gov/project_info_description.cfm?projectnumber=2R01GM071966-10A1

Funder

NIH

Principal Investigator(s)

Cynthia He

Project Title

Linking Defects in Cortical Network Activity with Altered Sensory Perception in Fragile X Mice

Weblink / Project Description

http://projectreporter.nih.gov/project_info_description.cfm?projectnumber=1F30NS093719-01

Funder

NIH

Principal Investigator(s)

Caitlyn M. Riedmann

Project Title

Determination of the Epigenetic Regulation of Gene Transcription by MECP2 in Neurons

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?projectnumber=1F31NS092418-01A1

Funder

NIH

Principal Investigator(s)

Jimmy L. Holder

Project Title

Rescuing Motor Deficits in Shank3 Related Disorders

Weblink / Project Description

http://projectreporter.nih.gov/project_info_description.cfm?projectnumber=1K08NS091381-01A1

Funder

NIH

Principal Investigator(s)

Molly-Maureen Huntsman

Project Title

Cortical Circuit Dysfunction in Fragile X Syndrome

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?projectnumber=1R01NS095311-01A1

Funder

NIH

Principal Investigator(s)

Michaela Fagiolini

Project Title

VIisual circuit Regression and ITS Rescue in RTT Mouse Models

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?projectnumber=1R01NS095959-01A1

Funder

NIH

Principal Investigator(s)

Benjamin Deneen

Project Title

The Nature of Astrocyte Heterogeneity in RTT

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?projectnumber=1R21NS089366-01A1

Funder

NIH

Principal Investigator(s)

Michael Wong

Project Title

Mechanisms of Brain Dysfunction in Tuberous Sclerosis

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?projectnumber=2R01NS056872-09A1

Funder

NIH

Principal Investigator(s)

Huda Y. Zoghbi

Project Title

Molecular Pathogenesis Studies of Rett Syndrome

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?projectnumber=5R01NS057819-10

Funder

NIH

Principal Investigator(s)

Scott H. Soderling

Project Title

Fragile X Phenotypes Modulated by Altered Signaling to the Synaptic Cytoskeleton

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?projectnumber=5R01NS059957-07

Funder

NIH

Principal Investigator(s)

Zhaolan Zhou

Project Title

Understanding the Pathogenic Mechanisms of Rett Syndrome

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?projectnumber=5R01NS081054-03

Funder

NIH

Principal Investigator(s)

Vitaly A. Klyachko

Project Title

The Role of PK Channels in Neuropathology of Fragile X Syndrome

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?projectnumber=5R01NS089449-02

Funder

NIH

Principal Investigator(s)

Marl F. Bear

Project Title

Validating a Novel Target for correction of Pathophysiology in Fragile X and TSC

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?projectnumber=5R21NS087225-02

Funder

NIH

Principal Investigator(s)

Samie R. Jaffrey

Project Title

Testing the Role of Small RNAs in FMR1 Promotor Silencing in Fragile X Syndrome

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?projectnumber=5R21NS087859-02

Funder

NIH

Principal Investigator(s)

Kerstin Maria Ure

Project Title

Rescue of Gabaergic Function in a Mouse Model of Rett Syndrome

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?projectnumber=1F32NS083137-01A1

Funder

NIH

Principal Investigator(s)

Peter K. Todd

Project Title

Pathogenic Mechanisms in Fragile X Tremor Ataxia Syndrome

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?projectnumber=5K08NS069809-05

Funder

NIH

Principal Investigator(s)

Onanong Chivatakarn

Project Title

Analysis of the Tumor Suppressor Gene TSC1 in Motor Neuron Patterning

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?projectnumber=5K99NS083758-02

Funder

NIH

Principal Investigator(s)

Peter K. Todd

Project Title

CGG Repeat Associated Translation in Fragile X-Associated Tremor/Ataxia Syndrome-Diversity Supplement

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?projectnumber=3R01NS086810-01S1

Funder

NIH

Principal Investigator(s)

Robert Macdonald

Project Title

GABA(A) Receptor Assembly/ Trafficking/Function and Epilepsy Missense Mutations

Weblink / Project Description

http://projectreporter.nih.gov/project_info_description.cfm?projectnumber=5R01NS033300-20

Funder

NIH

Principal Investigator(s)

Michael Greenberg

Project Title

Neuronal Activity-Dependent Regulation of MeCP2

Weblink / Project Description

https://projectreporter.nih.gov/project_info_details.cfm?aid=8635394&icde=0

Funder

NIH

Principal Investigator(s)

Edward Cooper

Project Title

KCNQ2 Epileptic Encephalopathy: Overcoming Hurdles to Effective Disease-Modifying Therapy

Weblink / Project Description

https://projectreporter.nih.gov/project_info_description.cfm?projectnumber=1R13NS095592-01

Funder

NIH

Principal Investigator(s)

William Dobyns

Project Title

The genetic basis of Dandy-Walker and other mid-hindbrain malformations

Weblink / Project Description

http://projectreporter.nih.gov/project_info_description.cfm?projectnumber=2R01NS050375-11

Funder

NIH

Principal Investigator(s)

Shigeki Iwase

Project Title

Neutralizing epigenomes in neurodevelopmental disorders

Weblink / Project Description

http://projectreporter.nih.gov/project_info_description.cfm?projectnumber=1R01NS089896-01A1

Funder

NIH

Principal Investigator(s)

Elliott Sherr

Project Title

ACC: Callosal Agenesis as a Window into Common Neurodevelopmental Disorders

Weblink / Project Description

http://projectreporter.nih.gov/project_info_description.cfm?projectnumber=2R01NS058721-07A1

Funder

PCORI

Principal Investigator(s)

C. William Shuttleworth, PhD

Project Title

Pathways to Partnership: Communication and Collaboration Skills for Creating PCOR Teams

Weblink / Project Description

http://www.pcori.org/research-results/2015/pathways-partnership-communication-and-collaboration-skills-creating-pcor

Funder

PCORI

Principal Investigator(s)

Megan O'Boyle, BA

Project Title

Phelan-McDermid Syndrome Data Network (PMS_DN)

Weblink / Project Description

http://www.pcori.org/research-results/2015/phelan-mcdermid-syndrome-data-network-pmsdn

Funder

PCORI

Principal Investigator(s)

Geraldine Bliss, MS

Project Title

Phelan-McDermid Syndrome Patient-Centered Outcomes Workshop

Weblink / Project Description

http://www.pcori.org/research-results/2015/phelan-mcdermid-syndrome-patient-centered-outcomes-workshop

Funder

PCORI

Principal Investigator(s)

Kenneth D. Mandl, MD, MPH

Project Title

Scalable Collaborative Infrastructure for a Learning Healthcare System (SCILHS)

Weblink / Project Description

http://www.pcori.org/research-results/2015/scalable-collaborative-infrastructure-learning-healthcare-system-scilhs

Funder

PCORI

Principal Investigator(s)

Christopher B. Forrest, MD, PhD

Project Title

Development of the PROMIS Pediatric Sleep Health Item Banks

Weblink / Project Description

http://www.pcori.org/research-results/2014/development-promis-pediatric-sleep-health-item-banks


Appendix C

ASD Research Progress on IACC Strategic Plan Objectives: Summary of Years 2008-2015

The tables include data (project numbers and funding) from Federal and private funders of ASD research for years 2008 through 2015, as aligned with the objectives of the 2011 IACC Strategic Plan. Please note the following:

During the updating of the Strategic Plan from 2008-2010, the wording and numbering of objectives changed. Data included in each Portfolio Analysis Report from 2008-2015 was categorized at the time with respect to the most recent iteration of the Strategic Plan where the objectives had changed. For the purpose of this eight-year comparison, data from the Portfolio Analyses conducted in 2008 and 2009 were aligned with the most recent objectives, found in the 2011 Strategic Plan. The full wording of the 78 objectives listed in the 2011 Strategic Plan is depicted above the objective’s abbreviation and annual funding.

The middle eight columns of the table contain the data (project numbers and funding) for each individual year from 2008-2015, with the objective number (as it appeared in the annual Portfolio Analysis ) listed above it. The format of objective numbers are abbreviations representing the question number (indicated by a numeral 1-7), whether the objective is a short- or long-term objective (indicated by the letter “S” or “L”, respectively), and the objective designation (indicated by a letter). The IACC recommended budget listed below the project data represents the most updated budget listed in the 2011 Strategic Plan . If the recommended budget has been revised since 2008, the year the revision took place is found in parentheses following the budget figure. Therefore, if there is no mention of a revision, the IACC recommended budget has remained constant from 2008-2011. The annual project status for each objective from 2008-2015 is indicated within the table by colored highlighting of the objective number. An objective is considered active if its status is green or yellow, and inactive if its status is red.

  • Any objective colored green has funding which is greater than or equal to the recommended funding for that year (determined by annualizing the recommended budget associated with that objective); any objective colored yellow has actively funded projects, but with funding that totals less than the annualized recommended amount; any objective colored red has no active, funded projects.3
  • Objectives whose overarching aim (e.g., the ultimate goal of the research, irrespective of the number of projects or the budget for the objective) were achieved/partially achieved either in a previous year, with less annual funding than was recommended, or with funding that was not captured in the portfolio analyses4 are colored pale green/pale yellow.

The far right column of the table lists the sum of the total funding aligned with each objective from 2008-2015. Highlighting of each total gives an indication of the overall progress toward completing 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.
  • Objectives whose overarching aim (e.g. the ultimate goal of the research, irrespective of the number of projects or the budget for the objective) was achieved/partially achieved either with a lower funding level than was recommended or with funding that was not captured in the portfolio analyses, are colored pale green/pale yellow.

3 Please note that while the green, yellow, and red indicators suggest a funding status for each year and that looking across all years may give some indication of a trend, some agencies and organizations provide all the funding for multiyear grants in a single year, resulting in the appearance of “less funding” in other years; projects completing the objectives may still have been ongoing in the years where the funding appears to be less. Thus, it is important to note the numbers of projects in looking across the chart, and to keep in mind that in a series, where, for example, most of the indicators are green, that the objective is likely to be largely “complete” according to the funding-based measure.

4 Reasons why funding for certain projects may not have been captured in the portfolio analyses include projects that were supported by funding that was not specific for autism (i.e., projects that benefited autism but were supported by general neuroscience or developmental disorder funding) or projects supported by funders that did not participate in the portfolio analysis in a given year.


Appendix D

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 autism symptoms. It also encompasses projects aimed at adapting clinical assessments into other languages for use in multi-lingual community settings and non-U.S. countries.

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 symptoms, including both biological and behavioral characteristics. 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 impairments can contribute to symptom development 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 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 risk factors for 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 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 risk for 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 increased risk for ASD or to better understand genetic risk 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.

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.

Medical/Pharmacologic

This subcategory includes research on drugs (e.g., antidepressants, 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 balance 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.

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

Due to the small number of projects (35 in 2014 and 37 in 2015) and the significant overlap between topics covered in these projects, no subcategories were created for this question in the 2014-2015 Portfolio Analysis Report. As the research field grows, subcategories that encapsulate the scope of projects in this question may be defined in the future.

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.

Research infrastructure

This subcategory includes coordinating centers that support multiple research projects by running tests, analyzing data, and providing statistical analyses. 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).

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 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 2014.

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 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 (NIMH) and Chair, IACC National Institutes of Health Rockville, MD

Federal Members

  • James F. Battey, M.D., Ph.D. Director National Institute on Deafness and Other Communication Disorders National Institutes of Health Bethesda, MD
  • Linda Birnbaum, Ph.D. Director National Institute of Environmental Health Sciences and National Toxicology Program National Institutes of Health Research Triangle Park, NC
  • Aaron Bishop, M.S.S.W. Commissioner Administration on Intellectual and Developmental Disabilities Administration for Community Living Washington, DC
  • Francis S. Collins, M.D., Ph.D. Director National Institutes of Health Bethesda, MD
  • Denise Dougherty, Ph.D. Senior Advisor for Child Health and Quality Improvement Agency for Healthcare Research and Quality Washington, DC
  • Ruth Etzel, M.D., Ph.D. Director Office of Children’s Health Protection Environmental Protection Agency Washington, DC
  • Tiffany R. Farchione, M.D. Medical Officer Division of Psychiatry Products Center for Drug Evaluation and Research 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
  • Laura Kavanagh, M.P.P. Director Division of Research, Training and Education Maternal and Child Health 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, PharmD, MPH Pharmacist Officer Agency for Healthcare Research and Quality Rockville, MD
  • Marcella Ronyak, Ph.D., LCSW, CDP Deputy Director Division of Behavioral Health, Indian Health Service (IHS) Headquarters Rockville, MD
  • Stuart K. Shapira, M.D., Ph.D. Associate Director Science and Chief Medical Officer National Center on Birth Defects and Developmental Disabilities Centers for Disease Control and Prevention Atlanta, GA
  • Melissa Spencer Deputy Commissioner Office of Disability Policy Social Security Administration
  • 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
  • Amy Goodman, M.A. Self-Advocate Charles Town, WV
  • Shannon Haworth Public Health Program Manager Association of University Centers on Disabilities Silver Spring, MD
  • 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
  • Brian Parnell, M.S.W, C.S.W. Administrator Medicaid Autism Waiver & Community Supports Waiver Division of Services for People with Disabilities Utah Department of Human Services Draper, UT
  • Kevin Pelphrey, Ph.D. Carbonell Family Professor and Director Autism & Neurodevelopmental Disorders Institute George Washington University & Children's National Medical Center Washington, DC
  • Edlyn Peña, Ph.D. Associate Professor Educational Leadership and 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 Vencerx Therapeutics New York, NY
  • 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 and Special Education Vanderbilt University Investigator Vanderbilt Kennedy Center Nashville, TN
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National Institute of Mental Health
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Office of Autism Research Coordination Staff

  • Susan Daniels, Ph.D. Director
  • Oni Celestin, Ph.D. Science Policy Analyst
  • Amanda Garton, M.S., M.S.P.P. Presidential Management Fellow
  • Jamie Kleiner Science Policy Intern
  • Rebecca Martin, M.P.H. Public Health Analyst
  • Angelice Mitrakas, B.A. Management Analyst
  • Karen Mowrer, Ph.D. Science Policy Analyst
  • Julianna Rava, M.P.H. Science Policy Analyst
  • 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
Office of Autism Research Coordination, National Institute of Mental Health, on behalf of the Interagency Autism Coordinating Committee (IACC). 2014-2015 IACC Autism Spectrum Disorder Research Portfolio Analysis Report. October 2017. Retrieved from the U.S. Department of Health and Human Services Interagency Autism Coordinating Committee website: https://iacc.hhs.gov/publications/portfolio-analysis/2015/.

Appendices

 
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