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Diseases

Genetic and Rare Diseases Information Center (GARD)

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Ataxia with vitamin E deficiency


Other Names for this Disease
  • Ataxia with isolated vitamin E deficiency
  • AVED
  • Familial isolated deficiency of vitamin E
  • Friedreich-like ataxia with selective vitamin E deficiency
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Research


Clinical Trials & Research for this Disease

  • The U.S. National Institutes of Health, through the National Library of Medicine, developed ClinicalTrials.gov to provide patients, family members, and members of the public with current information on clinical research studies. There is a study titled Study of Inherited Neurological Disorders which may be of interest to you. To find this trial, click on the link above.

Patient Registry

  • The Clinical Research Consortium for Spinocerebellar Ataxias is a team of doctors, nurses, research coordinators, and research labs throughout the U.S., working together to improve the lives of people with spinocerebellar ataxia types 1, 2, 3, and 6 through research. The Clinical Research Consortium for Spinocerebellar Ataxias has a registry for patients who wish to be contacted about clinical research opportunities.

    For more information on the registry see:  http://rarediseasesnetwork.epi.usf.edu/registry/index.htm
  • 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.