The NAF website has on their front page a link to for a registry for ataxia to help with research. I have copied the information an posted below. It is now open to people outside of the United States. The more people they get registered it will help them do more research. I just filled out the enrollment request form. I've also added a link to a letter from Dr. S H Subramony M.D. Professor of Neurology explaining what happened to the old registry.
http://www.ataxia.org/pdf/CoRDS-Dr%20_Subramony.pdf
New Ataxia Patient Registry Launched
The National Ataxia Foundation is pleased to announce a partnership with Sanford Research in the establishment of an ataxia patient registry called the Coordination of Rare Diseases at Sanford (CoRDS).
The new patient registry will offer a streamlined enrollment process for participants, has the technological support of a world-class, state-of-the-art software development company and expert IT personnel to assure a secure and robust system in managing clinical research, and now is available to international participants.
This partnership will significantly help in moving ataxia research forward. Sanford, through CoRDS, offers rare disease organizations such as NAF a robust patient registry at no cost. The registry is funded through the Sanford Children’s Health Research Center and through a Sanford Health Foundation grant.
If you have previously registered or have been thinking about registering, we encourage you to register in the new CoRDS ataxia patient registry. To register in the CoRDS ataxia patient registry, you may contact CoRDS personnel at (605) ■■■■■■■■ or email ■■■■■■■■■■■■■■■■■■■■■■■ or go directly to their website at https://www.sanfordresearch.org/cords/cordsregistryform/ to begin the registration process.
A heartfelt thank you to all who had registered in our previous patient registry, the National Ataxia Registry. We are truly grateful to all of you for your commitment in accelerating ataxia clinical research. The new ataxia patient registry will significantly help in this acceleration and continued advancement of research in all forms of ataxia.
The CoRDS registry is now accepting registrations for those with ataxia and those who are at-risk for ataxia and offers a web based patient self-reporting system. Enrollment is a two-step process:
- Step 1: Complete the one page CoRDS Registry Screening Form. Online registrants will receive an email with a unique username and password and link to the CoRDS secure portal.
- Step 2: Log-in to the secure portal to complete the informed consent form and ataxia questionnaire. After completing the questionnaire and clicking submit, the enrollment process is complete. The complete process takes approximately 20 minutes to fully register.
To ensure that the National Ataxia Foundation is able to access various information, please indicate that you give permission to provide the information that you submit to the CoRDS Registry to the National Ataxia Foundation on the consent form. Please register today.
The purpose of the CoRDS ataxia patient registry, in partnership with NAF, is to facilitate research on ataxia by providing a resource through which researchers can screen for prospective study participants. In this way, researchers, physicians and patients are working together to advance ataxia research.
Participant’s names and contact information remain private. CoRDS will contact registrants, on behalf of the IRB approved researchers, inviting them to participate in a study. Registrants may update their information at any time and will be contacted annually by CoRDS for any additional updates. Thank you for participating in the CoRDS ataxia patient register to help further important ataxia research efforts