- 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: http://www.acf.hhs.gov/programs/add/
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
http://aadmd.org/sites/default/files/JAMA_article_July_7_2010.pdf (PDF - 110 KB)
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
http://www.nwwcommittee.org/pdf/the-renaming-of-mental-retardation.pdf (PDF - 122 KB)