Research with CoRDS

Join the CoRDS Initiative. Help Accelerate Research.

Here at Sanford Research, we are committed to finding cures and advancing therapies into rare diseases. To further this mission, we established the Coordination of Rare Diseases at Sanford (CoRDS) – a national rare disease registry designed to accelerate research into these rare conditions. In addition to acting as a general patient registry for individuals diagnosed with any rare condition, CoRDS also hosts several disease-specific registries in partnership with recognized patient advocacy groups. 

CoRDS hosts the following disease-specific registries:

Apply for Access:

If you are conducting an IRB-approved investigation concerning a rare disease, we invite you to apply for access to the CoRDS Registry. CoRDS can help you connect with individuals diagnosed with your disease(s) of interest. 

Approved researchers can view our de-identified patient database for research purposes and can also request that we contact participants on their behalf to let them know about clinical trials or research studies that they may be eligible for.

The CoRDS Registry utilizes the GRDR Common Data Elements recommended by the NIH/NCATS GRDR® Program.

To apply for access to the CoRDS Registry, complete the CoRDS Researcher Access Request Form and return it to cords@sanfordhealth.org.

 

The NIH/NCATS GRDR® Program
Global Rare Diseases Patient Registry Data Repository
Our CoRDS Registry is a member of the GRDR program https://grdr.ncats.nih.gov/. Our de-identified data integration into GRDR will allow query by investigators to accelerate research across many rare diseases, that eventually may lead to the development of novel diagnostics and therapeutics for patient benefit.

Questions?

If you have questions, visit our list of Researcher FAQs. To learn more about the type of data present in the CoRDS Registry, please visit our metrics page. 

Additional questions - Contact Us!

We invite you to contact us about how we can work together to accelerate research into rare diseases by creating a central resource for physicians, researchers, organizations, and individuals alike.

Toll-Free: 1-877-658-9192 or cords@sanfordhealth.org