Patient Registries

Patient Registries are essential tools to help researchers move into translational or clinical phases of research. If you or a family member are affected by ataxia or are at risk for ataxia, sign up on the appropriate patient registry listed below. (you can be included on more than one patient registry.)

Ataxia Patient Registry at CoRDS The CoRDS Registry was established to facilitate the establishment of rare disease registries for all rare diseases with a specific questionnaire for those with any type of ataxia or those at risk for ataxia.

CoRDS Registry at Sanford Research Video

 

Friedreich's Ataxia Research Alliance Patient Registry for those with Friedreich’s ataxia.

The Fragile X Research Registry is for families who have individuals with Fragile X-associated tremor/ataxia syndrome (FXTAS) in the United States.

 

 

Patient Databases

Autosomal recessive spastic ataxia of Charlevoix-Saguenay ARSACS The purpose of this website is to create a new database for the SACSIN gene mostly reported in the province of Quebec, Canada.

Ataxia-Telangiectasia (A-T) Children's Project Family Data Base is to help A-T families stay in touch with the A-T Children's Project for information about clinical studies.