Intellectual and Developmental Disabilities (IDDs): For Researchers and Health Care Providers

• NICHD
  • 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.
  • American Journal on Intellectual and Developmental Disabilities
  • Intellectual and Developmental Disabilities
• Association of University Centers on Disabilities : This organization supports research on many different types of developmental disorders.
  • University Centers for Excellence in Developmental Disabilities Education, Research, and Service (UCEDD)
  • Leadership Education in Neurodevelopmental and Related Disabilities (LEND)
  • Intellectual and Developmental Disabilities Research Centers (IDDRCs)
• American Speech-Language-Hearing Association : This organization supports and promotes research on speech, language, and hearing.
  • Research
  • Publications
• 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
  https://www.ncbi.nlm.nih.gov/pubmed/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
  https://www.aaiddjournals.org/doi/full/10.1352/1934-9556%282007%2945%5B116%3ATROMRU%5D2.0.CO%3B2