Your browser does not support javascript:   Search for gard hereSearch for news-and-events here.


Genetic and Rare Diseases Information Center (GARD)

Print friendly version

Rett syndrome

Other Names for this Disease
  • Autism, dementia, ataxia, and loss of purposeful hand use
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.


Clinical Trials & Research for this Disease

  • The Autism Speaks organization has information about the many opportunities that are available for families who want to participate in autism research. Click on the link to learn more about the way families can participate.
  • lists trials that are studying or have studied Rett syndrome. Click on the link to go to to read descriptions of these studies.
  • The Rare Diseases Clinical Research Network (RDCRN) facilitates collaboration among experts in many different types of rare diseases. The RDCRN is conducting a research study that involves observing individuals with Rett syndrome over an extended period of time. This study is called the Rett Syndrome Natural History Study. Click on the name of the study for more information.
  • The Research Portfolio Online Reporting Tool (RePORT) provides access to reports, data, and analyses of research activities at the National Institutes of Health (NIH), including information on NIH expenditures and the results of NIH-supported research. Although these projects may not conduct studies on humans, you may want to contact the investigators to learn more. To search for studies, click on the link and enter the disease name in the "Terms Search" box. Then click "Submit Query".

Patient Registry

  • The Angelman, Rett & Prader-Willi Syndromes Consortium is a team of doctors, nurses, research coordinators, and research labs throughout the U.S., working together to improve the lives of people with Angelman, Rett, and Prader-Willi Syndromes through research. The Angelman, Rett & Prader-Willi Syndromes Consortium has a registry for patients who wish to be contacted about clinical research opportunities.

    Angelman, Rett & Prader-Willi Syndromes Consortium Registry
    Department of Molecular and Human Genetics
    Baylor College of Medicine
    One Baylor Plaza Rm. T619
    Houston TX 77030
    Telephone: 713-798-4795
    Fax: 713-798-7773 
    For more information on the registry see:

  • 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.