FARA Patient Registry 

Welcome to the Friedreich's Ataxia Research Alliance (FARA) patient registry. The purpose of the registry is to collect some basic information on individuals with FA. This information will be used to facilitate and expedite clinical trials and get us all closer to treatments for FA. Basically, this is a way for you to get your name and contact information to researchers who will be conducting clinical research trials. Recruitment for clinical trials can often take a long period of time especially for a rare disease like FA. Your participation in this registry could help speed up that process considerably, because your information would be shared with scientists and companies recruiting patients for FA clinical trials in the near future.

This registry is only for individuals diagnosed with Friedreich's ataxia. The homepage of this website also includes information on other patient registries and clinical trials.

Preparing to register: When you register you will be asked about your contact information and about your diagnosis. For example, there are questions about your age of onset and genetic testing for FA. For individuals less than 18 years of age, we request that your parent or guardian provide consent for entrance into the registry.

Clinical Trials

Idebenone Phase III Trial 

Clinical Research Studies

Cardiomyopathy in FA 

Frequently Asked Questions

FAQs (English)

FAQs (Español)

FAQs (Français)

FAQs (Italiana)

FAQs (Swedish)

FAQs (Portuguese)

Translated Registry Guides

Guide (Español)

Guide (Français)

Guide (Italiana)

Guide (Swedish)

Guide (Portuguese)

Related Resources and Links

Here are some additional resources regarding and information about patient registries and clinical trials. Some of the sites allow you to search for current clinical trials for a specific disease.

Other Registries 

www.cooperative-ataxia-group.org