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Diseases

Genetic and Rare Diseases Information Center (GARD)

Friedreich ataxia


Other Names for this Disease
  • Friedreich's ataxia
  • Spinocerebellar ataxia, Friedreich
  • Hereditary spinal sclerosis
  • Hereditary spinal ataxia
  • FRDA
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.

Research

GARD Video Tutorial

  • How to Get Involved in Research – A video developed by GARD Information Specialists that explains how you can find out about research for a rare disease.

Clinical Trials & Research for this Disease

  • ClinicalTrials.gov lists trials that are studying or have studied Friedreich ataxia. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.
  • The Collaborative Clinical Research Network in Friedreich's Ataxia (CCRN in FA) is an international network of clinical research centers that work together to advance treatments and clinical care for individuals with Friedreich ataxia. Patients can contact the nearest center to learn about the studies and clinical services being offered.
  • 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, enter the disease name in the "Text Search" box. Then click "Submit Query".

Patient Registry

  • Friedreich's Ataxia Research Alliance (FARA) has a registry where patients can provide demographic and clinical information. People who register will be informed about opportunities to participate in clinical research studies and kept up-to-date on the progress of clinical trials.
  • 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.
Other Names for this Disease
  • Friedreich's ataxia
  • Spinocerebellar ataxia, Friedreich
  • Hereditary spinal sclerosis
  • Hereditary spinal ataxia
  • FRDA
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.