Invitation to join the International ARSACS Patient Registry if you or a family member has received a diagnostic confirming that the person has ARSACS. This invitation stands even if you have already joined another patient registry.
The International ARSACS Patient Registry is a collection of basic information about individuals diagnosed with ARSACS regardless of their country of residence. Your participation in this registry will greatly contribute to the development of treatments for the disorder. The registry is to facilitate contact between ongoing researchers and patients who wish to be contacted about participating in clinical trials. In addition to being an essential tool to researchers, a patient registry will provide an idea of the market size and the potential for trial recruitment which are crucial elements when discussing drug development possibilities with pharmaceutical companies.
The research community needs you and this is a way for you to help finding a treatment.
The registration is on a voluntary basis. At any time a participant can withdraw from the register or no longer wish to receive electronic messages from the Ataxia Charlevoix-Saguenay Foundation. You may unsubscribe by sending an email to: firstname.lastname@example.org or in writing to : Ataxia Charlevoix- Saguenay Foundation, 1000 Sherbrooke West, suite 2100 Montreal, Quebec H3A 3G4.