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Diseases

Genetic and Rare Diseases Information Center (GARD)

Other Names for this Disease
  • Fra(X) syndrome
  • FRAXA syndrome
  • FXS
  • Marker X syndrome
  • Martin-Bell syndrome
More Names
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Research


Clinical Trials & Research for this Disease

Patient Registry

  • Individuals can join The Fragile X Registry if they wish to be contacted about clinical research opportunities through The Waisman Center at the University of Wisconsin-Madison and the Carolina Institute for Developmental Disabilities at the University of North Carolina at Chapel Hill.

    Fragile X Research Registry
    Toll-free: 1-866-744-7879
    E-mail: info@fragilexregistry.org
    Web site: http://www.fragilexregistry.org/
  • You can sign up with the FRAXA Research Foundation for updates regarding research and clinical trial opportunities.  Click on the link above to access the application form.
  • ResearchMatch is a free national research registry designed to bring together patients, healthy volunteers and researchers. Anyone from the United States can register with ResearchMatch, and a parent, legal guardian, or caretaker may register on behalf of a volunteer. Researchers from participating institutions use the ResearchMatch database to search for patients or healthy volunteers who meet the study criteria. Many studies are looking for healthy people of all ages, while some are looking for people with specific illnesses. ResearchMatch was developed by major academic institutions across the country and is funded by the National Center for Research Resources (NCRR), a center of the National Institutes of Health (NIH), the primary Federal agency for conducting and supporting medical research. Click on the link to learn more about ResearchMatch.

General Clinical Trials & Research

  • NIH Clinical Trials and You is a website developed by the National Institutes of Health (NIH) to help people learn more about clinical trials, why they matter, and how to participate.