Down Syndrome: For Researchers and Health Care Providers

• The Down Syndrome Consortium is a public-private collaboration that provides a forum for promoting the NIH Research Plan on Down Syndrome (PDF - 351 KB) and fosters the exchange of information on biomedical and biobehavioral research on the syndrome.
• Visit About the Consortium to learn more about the Consortium and its members.
• About the National Down Syndrome Patient Registry describes the Consortium’s efforts to create a national patient registry.
  
  
• NICHD Resources on Down Syndrome
• The NICHD Intellectual and Developmental Disabilities Branch (IDDB)
  supports research and research training focused on preventing and lessening the impact of intellectual and developmental disabilities. The Branch supports biomedical, biobehavioral, and translational research in many areas related to IDDs. Read the most recent IDDB Report to the NACHHD Council.
• The NICHD Eunice Kennedy Shriver Intellectual and Developmental Disabilities Research Centers program
  provides core infrastructure and research support for investigators with independently funded projects to understand the causes of IDDs as well as their prevention, management, and treatment through biomedical and behavioral approaches.
  
  
• NIH Resources on Down Syndrome
  
  • The NIH Research Plan on Down Syndrome
    builds upon ongoing NIH-supported research and aims to take advantage of emerging scientific opportunities and set the stage for possible future collaborations.
  • National Institute of Dental and Craniofacial Research
    webpage provides oral care guidance for people with Down syndrome and links to information on care strategies related to other health areas.
  • National Institute of Neurological Disorders and Stroke also supports and conducts research on Down syndrome. Read the report from a workshop on Down syndrome, Down Syndrome: Toward Optimal Synaptic Function and Cognition .
    

• The Brain and Tissue Bank for Developmental Disorders at University of Maryland, Baltimore is a human tissue repository that systematically collects, stores, and distributes brain and other tissues for research dedicated to the improved understanding, care, and treatment of individuals with developmental disorders.
  
  
• Jackson Laboratory Cytogenetic & Down Syndrome Models Resource
  maintains and distributes stocks of mouse models for Down syndrome as well as the study of chromosomal aneuploidy.
  
  
• Knockout Mouse Project (KOMP) is a trans-NIH initiative that aims to generate a comprehensive and public resource comprised of mouse embryonic stem cells containing a null mutation in every gene in the mouse genome.
  
  
• National Down Syndrome Society (NDSS) provides information on research resources, conferences, and award programs.
  

• Down Syndrome Research and Treatment Foundation (DSRTF), works to stimulate biomedical research that will accelerate the development of treatments to improve cognition, including memory, learning, and speech, for individuals with Down syndrome. Read about the Foundation's grant application process.
  
  
• Association of University Centers on Disabilities (AUCD) is a national network of university-based interdisciplinary centers. Members' activities include academic training, basic and applied research, program evaluation, and dissemination of best practices.
  
  
• Linda Crnic Institute for Down Syndrome conducts basic, translational, and clinical research and provides medical care to people with Down syndrome.
  
  
• American Association on Intellectual and Developmental Disabilities (AAIDD) promotes research, effective practices, and universal human rights for people with intellectual and developmental disabilities.
  
  
• Research Down Syndrome supports cognitive research related to Down syndrome.
  
  
• Down Syndrome Medical Interest Group (DSMIG) hosts an annual meeting and clinical symposium for professionals who provide care to individuals with Down syndrome.
  
  
• Global Down Syndrome Foundation (GDSF) works to improve the lives of people with Down syndrome through research, medical care, education, and advocacy.
  
  
• American Academy of Pediatrics publishes the journal Pediatrics, which includes articles on Down syndrome, such as Health Supervision for Children with Down Syndrome (PDF - 891 KB).

Please note: Links to organizations and information included on this page do not indicate endorsement from the NICHD, NIH, or HHS.