Register
It is now possible for Ataxia patients and their family members to be added to the Cooperative Ataxia Registry through this website.
The Cooperative Ataxia Registry was established to collect information from people who have been diagnosed with Ataxia. Because Ataxia is a group of rare disorders, it requires a collaborative effort between scientist and patients across North America to study. This registry will enable progress in collecting large numbers of patients necessary for conclusive data on natural history of disease progression, identification of new Ataxia genes, and therapeutic treatment efficacy. People who participate in the National Ataxia Registry can be made aware of research projects that they may be eligible to participate in. CAG members can use the data in the Registry for assistance in recruiting people to participate in their research studies.
If you choose to participate in the Cooperative Ataxia Registry, you will be informed about studies that you may be eligible to participate in. If you are interested in participating in certain studies, you will be provided with a contact number for each individual study. If you choose to participate you can call that number and receive detailed information about the study. You are under no obligation to volunteer for any study. The Cooperative Ataxia Registry will not release your name or any information that is collected in the registry that may be used to identify you personally. However, the registry will share data that has been stripped of any information that can identify you with all members of the CAG so that calculations of numbers of patients in North America who are affected with Ataxia can be calculated.
Only through this collaborative effort can we make major progress in understanding, treating, and eventually curing Ataxia.
