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 1,000 Friedreich’s ataxia patients from across the United States and internationally. This registry was created to serve the patient, physician, and research communities.
New therapies for Friedreich Ataxia are in clinical trials with encouraging results and giving real hope for people living with FA today. Individuals with FA should enroll online in the FA Global Patient Registry to ensure that they receive a recruitment notice for any trial which they appear to be eligible:
Participation in the FA Global Patient Registry ensures that patients are informed about opportunities to participate in clinical research studies and kept up-to-date on the progress of clinical trials. Physicians can refer their FA 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.
The FA Global Patient Registry is a patient recruitment and communications tool for both academic and industry sponsored clinical research studies and trials. The registry coordinator can perform queries based on the inclusion/ exclusion criteria of a study and send patients information about a study for which they qualify. Patients can be contacted by the registry coordinator via e-mail, mail, or by telephone.
To request a communication or query via the FA Global Patient Registry, please complete this Data Access Request form - and return it to the Global Patient Registry coordinator at FAGPR@curefa.org.
Opportunities to communicate with the patient community over time, while maintaining patient confidentiality
Enhanced patient recruitment through targeted recruitment notices to patients who best match the key inclusion/exclusion criteria for clinical research studies and trials
Pre-study planning - Information on the size of the FA patient population based on demographic features (e.g., age or geographic area) or clinical features (e.g. ambulation status).
The FAGPR has been collaboratively built on Pulse Infoframe's healthie™ platform.