Help Develop New Treatments

Help Develop New Treatments

Research alone can’t find the cure for Ataxia. Researchers need participation form people with Ataxia to get there. Here are things that you can do to help researchers develop new treatments and look for a cure.

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.

The National Ataxia Foundation is committed to providing information to those affected by ataxia including the availability of research studies and clinical trials for the study of ataxia.

Below you will find clinical trials and research opportunities for those with various types of ataxia.  These trials have been approved and monitored by an Institutional Review Board (IRB) to make sure the risks are as low as possible and are worth any potential benefits.

Natural History Study

Donating tissue for medical research is an importantand deeply personal decision. Proper planning can helpensure that wishes are accounted for and honored at thetime of your or a loved one’s passing. For additional information on tissue donation, contact the National Ataxia Foundation at naf@ataxia.org or call 763-553-0020. Thank you for considering this important legacy gift.

Brain Donation Donor Information Form (pdf)

Brain Donor Project