When someone you love has a rare disease, it can be devastating. But every day more information is being amassed to help combat these often deadly conditions.
One of the best ways to join the fight is to get involved with the scientific organizations who are dedicated to finding treatments and cures. One of these organizations is The Coordination of Rare Diseases at Sanford (CoRDS) registry. It was established in 2010 as a national and central registry for all rare diseases. Its goal is to create a central database that can be accessed by scientists and medical professionals around the world to speed up the process of finding answers to the mysteries behind these under-studied conditions.
David Pierce, Ph.D. founded CoRDS, which is headquartered in the Sanford Children’s Health Research Center at Sanford Research in Sioux Falls, SD. The organization is leading the charge to study 7000 rare diseases. A recent article in the Argus Leader reported that the CoRDs registry currently has more than 4000 people with these diseases in its database.
Any individual diagnosed with a rare disease, an uncommon disease with unknown prevalence, or any individual who is undiagnosed can enroll in CoRDS. According to its website, “the CoRDS registry specifically houses basic contact and clinical information on any individual who chooses to enroll that has been diagnosed with a rare disease, a disease of unknown prevalence, or is still waiting for a diagnosis. Researchers with appropriate IRB (Institutional Review Board) approval may apply to access that de-identified data set in order to determine if any individuals in the registry are eligible for their research study.”
