- Autism Centers of Excellence (ACE) Program
- Eunice Kennedy Shriver Intellectual and Developmental Disabilities Research Centers (EKSIDDRCs)
- Fragile X Syndrome Research Centers (FXRSC)
- Paul D. Wellstone Muscular Dystrophy Cooperative Research Centers (MDCRCs)
- Rare Diseases Clinical Research Consortia Supported by NICHD
- HHS Administration on Intellectual and Developmental Disabilities: https://acl.gov/about-acl/administration-disabilities
- Centers for Disease Control and Prevention: National Center on Birth Defects and Developmental Disabilities: Supports research and data collection on birth defects and developmental disabilities.
- Autism and Developmental Disabilities Monitoring (ADDM) Network
- Centers for Autism and Developmental Disabilities Research and Epidemiology (CADDRE)
- Study to Explore Early Development (SEED)
- Research and Tracking Birth Defects
- Research on Developmental Disabilities
- Monitoring Developmental Disabilities
- American Association on Intellectual and Developmental Disabilities (AAIDD) : Professional society on intellectual and developmental disabilities geared toward researchers and health care providers.
- Association of University Centers on Disabilities : This organization supports research on many different types of developmental disorders.
- American Speech-Language-Hearing Association : This organization supports and promotes research on speech, language, and hearing.
- American Psychological Association: Intellectual and Developmental Disabilities (IDDs) : Supports research and other interest areas in IDDs.
- Journal of Intellectual and Developmental Disability : This journal publishes research papers and review articles on IDD.
- Journal of Intellectual Disability Research : This journal publishes research papers, review articles, and commentary on research in intellectual disabilities.
- World Health Organization (WHO):
- "Global Resources for Persons with Intellectual Disabilities" (2007) (PDF - 5.59 MB)
- "World Report on Disability" (2011) (PDF - 10.44 MB)
- NIH, Office of Rare Diseases Research: This office provides research information and links to patient advocacy groups for rare diseases.
Selected Publications for Researchers
- Trends in the use of standardized tools for developmental screening in early childhood: 2002-2009.
Radecki, L., Sand-Loud, N., O'Connor, K. G., Sharp, S., & Olson, L. M. (2011). Trends in the use of standardized tools for developmental screening in early childhood: 2002-2009. Pediatrics, 128, 14-19. PMID: 21708798
http://pediatrics.aappublications.org/content/128/1/14.full.pdf+html (PDF - 92 KB)
- Aging adults with intellectual disabilities
Perkins, E. A., & Moran, J. A. (2010). Aging adults with intellectual disabilities. Journal of the American Medical Association, 304, 91-92. PMID: 20606156
- The renaming of mental retardation: Understanding the change to the term intellectual disability.
Schalock, R. L., Luckasson, R. A., Shogren, K. A., Borthwick-Duffy, S., Bradley, V., Buntinx, W. H., et al. (2007). The renaming of mental retardation: Understanding the change to the term intellectual disability. Intellectual and Developmental Disabilities, 45, 116-124. PMID: 17428134