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Welcome!

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The goals of the FA Global Patient Registry (FAGPR) are to collect information on all FA patients in one registry, to develop the registry into a powerful resource for research, and to engage the FA community in studies aimed at advancing our knowledge of FA and the treatments being developed.

This registry is only for people diagnosed with Friedreich's ataxia.

Participation in this registry will require your consent to share your data. Participation in the FAGPR is voluntary.

The registry is maintained by international patient advocacy organizations through a Governance Board. Please direct any questions to the registry coordinators at FAGPR@curefa.org



Frequently Asked Questions

+ What is the purpose of the FA Global Patient Registry?
+ How is the FA Global Patient Registry (FAGPR) different than EFACTS (European Friedreich’s Ataxia Consortium for Translational Studies) and FA-COMS (FA Clinical Outcome Measures)?
+ Is the registry available internationally?
+ Why is a patient registry vital to advancing knowledge about Friedreich’s ataxia?
+ What does the patient registry not do?
+ Is my data secure in the registry?
+ Was the FA Global Patient Registry reviewed for ethics approval?
+ How do I join the registry?
+ How often should I update my information in the registry?

The FAGPR has been collaboratively built on Pulse Infoframe's healthie™ platform.