Patient Registry

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General Information

We have partnered with The Coordination of Rare Diseases at Sanford (CoRDS) registry as it is a national and central registry for all rare diseases. Individuals who are undiagnosed are also eligible to enroll in CoRDS. The goal of CoRDS is to create a central resource of data on rare diseases to help accelerate research into rare diseases.

CoRDS is headquartered in the Sanford Children’s Health Research Center at Sanford Research in Sioux Falls, SD and supervised by David Pearce, PhD.

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Why CoRDS was established?

The CoRDS registry was established in 2010 by Dr. David Pearce after determining the benefits of patient registries on research. As very few rare diseases have dedicated patient registries, thus the goal of the CoRDS registry is to serve as a central resource for data on rare diseases with the aim of accelerating research into those diseases.

Want to know when the patient registry is launched?  Become a member to be notified!