Patient Registries
Episodic Ataxia Registry
The purpose of this registry is to provide an opportunity for individuals with Episodic Ataxia to register themselves to receive information about studies conducted by the Clinical Investigation of Neurologic Channelopathies (CINCH).
Episodic Ataxia Registry in Spanish
Cooperative Ataxia Registry (CAG)
A Registry for Individuals with Ataxia
By Chip Wilmot, MD, Ph.D.
The Emory Ataxia Center
Register by calling the Clinical Coordinator at the Emory Ataxia Center at 404-728-4782 or 404-728-4909.
A link: http://www.cooperative-ataxia-group.org/index.htm
Because the ataxias are such a rare and diverse group of disorders, researchers can have a hard time finding enough patients to conduct their studies. What is really needed is a large-scale resource that can foster cooperation between patients and researchers. To address this goal, we have recently established a registry of North American ataxia patients entitled The Cooperative Ataxia Registry. The registry will be a tool used to gather information about these rare diseases and to match patients interested in participating in research projects with researchers looking for eligible subjects. We believe this registry can serve as a major resource for the development of basic scientific, clinical research, and ultimately treatment protocols.
How does the registry work? With the patient's permission, we collect contact information and medical history data and store that information very securely here at Emory University. We then distribute data to researchers in a way that ensures complete confidentiality of all information.
ARSACS (SACSIN) Autosomal recessive spastic ataxia of Charlevoix-Saguenay
The purpose of this website is to create a new database for the SACSIN Gene mostly reported in the province of Quebec, Canada. http://www.medgen.mcgill.ca/SACSIN/index.php
