Friedreich’s Ataxia Global Patient Registry

Information

The Friedreich’s Ataxia Global Patient Registry is the only worldwide registry of Friedreich’s ataxia patients. This registry currently holds the demographic and clinical information on more than 2,000 Friedreich’s ataxia (FA) patients from across the United States and internationally. This registry was created to serve the patient, physician, and research communities.

The purpose of the registry is to collect some basic information on individuals with Friedreich’s ataxia. This information will be used to facilitate and expedite clinical trials and get us all closer to treatments for FA.

Registry LocationInternational - available to Australians
Registry ParticipationVoluntary
Registry Contact

Friedreich’s Ataxia Research Alliance
Springfield, USA

E: info@curefa.org
T: (484) 879-6160 (callers from Australia first dial 0011 + 1)
F: (484) 872-1402

Adding New Patients to Registry

Doctors can refer their Friedreich’s Ataxia patients to the patient registry so that he/she can consider registering. This is a simple online registry that individuals can complete themselves, however it is helpful if individuals have a copy of their genetic test results so that they are able to enter information about confirmation of diagnosis.
Further information on joining the registry.

Please see the website for more information

www.curefa.org/patient-registry

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