If you or a family member have been diagnosed with a rare disease, you can help researchers see the whole picture. You can play a vital role in finding cures and improving treatments by joining the Coordination of Rare Diseases at Sanford (CoRDS).
What is the CoRDS Registry?
It is an international, central patient registry for individuals diagnosed with a rare disease and individuals who remain undiagnosed. In the United States, a disease is considered rare if it affects fewer than 200,000 people. A central registry helps researchers who are looking to find a cure and improve treatments for these rare diseases.
How is CoRDS Unique?
Our database stores information on patients affected by rare, uncommon, or undiagnosed conditions. Because our patients’ privacy is our first priority, the database is secure and all information is protected. CoRDS provides a resource for researchers to identify study participants, and notifies registrants of research opportunities for which they are eligible. In addition, there is no charge to participants to enroll, or to researchers to access information.
How to join CoRDS
Registration is simple and takes approximately 10 minutes of your time. You will be asked to read and complete a consent form and brief questionnaire. CoRDS personnel are available to discuss the registry and answer any questions you may have. Your information will be stored in our database at Sanford Research. CoRDS personnel will follow up with you every year to update your information.
To enroll: Go to http://www.sanfordresearch.org/cords and click "Enroll in CoRDS." Or you can call (605) 312-6423
More information on the CoRDS registry, existing partners, rare disease education, and our programs is available at:
- (605) 312-6413 or (877) 658-9192
- Download the Brochure