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 Location | International - available to Australians |
| Registry Participation | Voluntary |
| Registry Contact | Friedreich’s Ataxia Research Alliance E: info@curefa.org |
| 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. |
| Please see the website for more information |