FMD Chat Partners With Sanford Health Rare Disease Registry

Fibromuscular dysplasia patients have a new way to participate in disease research, supported by FMD Chat. The Coordination of Rare Diseases at Sanford registry is a national and central registry of individuals of any age who have been diagnosed with a rare disease. The registry is open to all rare disease patients—and those who are as of yet undiagnosed—increasing the registry's appeal to researchers. The CoRDS Registry at Sanford Research is a member of the International Rare Disease Research Consortium (IRDiRC), an international group formed to work together across the globe in order to speed up research in the areas of rare disease.

“Being a part of this international consortium is an honor for Sanford Research. Because rare diseases do not impact a huge percentage of our population, they can be difficult to study and understand because the pool of volunteers is so small,” Liz Donohue, who oversees CoRDS, was quoted as saying in a recent news release about the program. “Work on rare diseases is being done around the world. Instead of working independently in silos we will now be able to pool our resources and make sure we’re heading forward in the same direction.”

Rather than traveling miles to a registry center or to see a specific doctor, patients who wish to enroll in the registry may do so on their own, for free, from the comfort of their own home. The registration process may be conducted entirely online or by mail. Patients provide basic contact, demographic, and clinical information, which is stored in a secure database system at Sanford. Only researchers who have secured Institutional Review Board and advisory board approval from Sanford Research and staff may view the de-identified data. If a researcher wishes to contact an enrolled patient, the researcher must first contact CoRDS. CoRDS in turn contacts the patient with the researcher's information. It is up to the patient whether he or she wishes to proceed by contacting the researcher. If the patient wishes to enroll in the researcher's study, the patient goes through an entirely separate consent process specific to the study. This process gives patients greater access to registry services and greater control over what studies are done using his or her information. Registry participants are never required to participate in any study; however, individuals and families are kept aware of opportunities to participate in research studies or clinical trials.

CoRDS is affiliated with Sanford Health, the largest, rural, not-for-profit healthcare system in the nation, and a teaching hospital for the Sanford School of Medicine at the University of South Dakota. The CoRDS registry is grant-funded and supported by the Sanford Health Foundation. Dr. David Pearce, Principal Investigator of the CoRDS Registry was appointed to the Executive Committee of the International Rare Disease Research Consortium because of the work being done and the financial commitment to rare disease research. In support of this commitment and in recognition of all rare disease patients, FMD Chat is partnering with CoRDS and the Sanford Health Foundation to contribute to the registry's future. In addition to promoting the CoRDS registry among FMD and other rare disease patients, FMD Chat will provide donor support through online fundraising.

“Collaboration is incredibly important to rare disease research," Donohue said. "We are delighted to partner with FMD Chat to provide a greater awareness of the CoRDS registry among individuals diagnosed with FMD.”

To enroll in the CoRDS registry, or for more information, visit sanfordresearch.org/cords/enroll. To contact CoRDS personnel with any questions or to request more information, call 605.312.6423 or email cords@sanfordhealth.org.

Those wishing to support the CoRDS registry directly may do so at this time by mailing a check to: Sanford Health Foundation, 1305 W. 18th Street, Sioux Falls, SD 57117 with Rare Disease Registry on the check's memo line. To speak to a Sanford Health Foundation representative, call 605.328.5700.