SIGN UP IN THE GLOBAL FRIEDREICH’S ATAXIA REGISTRY
FARA (Friedreich’s Ataxia Research Alliance) is a American Association similar to A.F.A.F (AssociationFrançaise de l’Ataxie de Friedreich).
Its main purpose is to support the medical research about FA.
On FARA’s website Friedreich’s Ataxia patients can sign up in the worldwide FA registry.
Untill now 3000 patients have signed up, among them only 26 French patients.
It’s a voluntary registration completed by the patients themselves or their families.
One of the goals of the European Ride Ataxia is to bring patients closer to the associations and to increase the number of FA patients or families enrolled in this global registry.
We are closely working with FARA to translate the registry’s items into different languages.
The interest of raising awareness for this registry is to show the pharma industry that patients and families are deeply involved and ready to cooperate.
The MAIN GOAL OF THIS REGISTRY is making clinical trials recruitment easier and patients more aware of these trials.
NB : Of course, there is no point for French patients to be recruited for clinical trials taking place in the US. But as trials are getting more and more global, you could be informed about French or European trials. We hope that in the short, medium or longer term patients could be more easily contacted to take part into trials where they would appear to be eligible.
This registry is a complement to other databases made by clinical research teams such as EFACTS where the datas have a medical value in order to gather scientific information about the disease and also prepare for future recruitment in further trials.
What are the steps to register ?
Website : <www.curefa.net/registry/ next page>, top of the page « translated registry guides » type on Français , the different steps are clearly explained
It is recommanded to have the results of the genetic test available to fill in some more medical questions .