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Genetic and Rare Diseases Information Center (GARD)

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Rett syndrome

Other Names for this Disease
  • Autism, dementia, ataxia, and loss of purposeful hand use
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Management Guidelines

  • GeneReviews provides current, expert-authored, peer-reviewed, full-text articles describing the application of genetic testing to the diagnosis, management, and genetic counseling of patients with specific inherited conditions. Click on the link to view the article on this topic.

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".