The Coordination of Rare Diseases at Sanford (CoRDS) coordinates the advancement of research into 7,000 rare diseases via data sharing and study recruitment. CoRDS works with advocacy groups such as the National Ataxia Foundation, individuals who have a diagnosis of any form of Ataxia, and researchers who are studying various types of Ataxias.
What is the patient registry?
Participating in CoRDS gives patients the chance to contribute to research. Information from the registry may lead to better physician decisions and diagnoses, along with better industry models for drug development.
You may be wondering, “What exactly is a patient registry?” A patient registry collects data that includes basic demographic information, health information, quality of life information, and specifics about a particular condition, such as various forms of Ataxia. A registry can serve as a way to contact members of a group later on, or it can serve to build up a story of the progression of a disease/condition, called its Natural History.
What is done with the information?
Participants can enroll in CoRDS by completing a questionnaire that was created in partnership with the National Ataxia Foundation. Researchers and clinicians can then apply for access to receive the de-identified data through the Sanford CoRDS Scientific Advisory Board. The de-identified information helps researchers when they are working on treatments, therapies, and trying to gain a better understanding of what is going on with a condition. Researchers will also request that CoRDS contact participants on their behalf about upcoming clinical trials or studies. After a participant has given consent to share data, patient advocacy groups can use data for non-research purposes, such as for education and grant applications.
Another common question participants have is, “Who owns the data at CoRDS?” Participants are the primary owners of the data because they control how the data is ultimately used. CoRDS simply stores the information as required by the Sanford Research Instituational Review Board (IRB). CoRDS will never sell, rent, or lease personal information.
How do you sign up?
So, how can you enroll today? By clicking here, you will be brought to the Activation Form. This simple form helps to set up your account with the CoRDS Registry. After you have completed the Activation Form, you will be able to complete questions specific to your condition either online in your account or by mail. If you choose mail based participation, CoRDS staff will be able to enter your data into the secured registry on your behalf.
In order to study the natural progression of a rare condition it is critical that participants update their information as frequently as their condition changes. Once a year, CoRDS will remind you to update any information or changes in symptoms. You, of course, are welcome to log into your account or request a new questionnaire at any time to update information.
If you have any questions or need help enrolling, give CoRDS a call at 1-877-658-9192 or email us at firstname.lastname@example.org We would be more than happy to assist in any way we can!