The Coordination of Rare Diseases at Sanford (CoRDS) national rare disease registry is now hosting an ataxia patient registry for people with Friedreich's ataxia (FA) or other disorders classified as ataxias (conditions that cause problems with balance or coordination).
A registry is a database of information about individuals with a specific condition that enables tracking of various health-related or quality-of-life outcomes.
The ataxia patient registry was formed through a partnership between the National Ataxia Foundation and Sanford Research. It's a part of the CoRDS Registry, which facilitates the establishment of registries for all rare diseases. A specific questionnaire is included for people who have any type of ataxia or who are at risk for ataxia.
The registry provides a secure way for participants to make their basic medical history known to researchers without sacrificing their privacy.
Participation is expected to help accelerate research focused on FA and other ataxias by providing a resource through which researchers can identify people who may be interested in participating in studies.
Names and contact information for those who enroll in the CoRDS ataxia patient registry will be protected. Registrants may choose to have their de-identified information shared with researchers or other patient registries. They also can choose to allow their information — which may include participants' names — to be shared with patient advocacy groups.
Registrants can update their information at any time and will be contacted annually by CoRDS for additional updates.
Participation is voluntary, and participants may withdraw from the registry at any time. Upon withdrawal, all of the participant's identifiable information will be removed.
If participants choose to share their de-identified information with researchers, they may be contacted about possible opportunities to participate in research. These could include:
In order to obtain registry data, researchers are required to have Institutional Review Board (IRB) approval for their research project and the permission of the CoRDS Scientific Advisory Board.
(To learn more about participating in a research registry, read To Register or Not to Register: Should you sign up with a research registry about your disease?)
Enrollment in the CoRDS Registry can be accomplished online or through the mail. Registration is expected to take approximately 20 minutes if done online.
To register, first fill out the CoRDS Registry form and indicate whether you prefer to complete enrollment online or by mail.
CoRDS will send an email to those who choose to enroll online that includes a username and password to log in to the secure site.
CoRDS will mail necessary forms to those who prefer not to enroll online.
For more information about how to enroll: