Rare disease registry expanding

Spanish and Portuguese translations to draw more patients from Latin America

people with puzzle peices all white one red

Because most physicians are not exposed to large numbers of rare disease patients, their knowledge of how best to treat these diseases, and determine their prognoses, can be incomplete.

These gaps in medical understanding are an obstacle for research efforts designed to improve the outlook of patients with rare diseases.

In 2010, David Pearce, Ph.D., executive vice president of innovation and research at Sanford Health, founded the Coordination of Rare Diseases at Sanford (CoRDS), a registry that serves as a central resource for data on rare diseases with the goal of accelerating research related to their treatment.

“Rare diseases deeply impact individuals and their families,” Dr. Pearce said. “When researchers, health care providers and individuals affected by rare diseases are connected through a central resource like CoRDS, we can look forward to real change in the field.”

Free for patients and researchers

CoRDS is free for patients to enroll and for researchers to access. Currently, however, the database is only available in English. Non-English-speaking participants must enlist the services of an interpreter to complete enrollment in the registry.

The Sanford Health Foundation board of directors recently allocated unrestricted funds to CoRDS to help provide translations of the registry into Spanish and Portuguese, allowing for increased patient participation in Latin America. The translation and integration with the database is expected to take up to 1,850 hours and about six months to complete.

The board saw the potential for this funding to make a real difference in helping advance treatments and cures for rare diseases. Expanding the language capabilities of CoRDS will allow millions more rare disease patients to participate in the CoRDS registry and could open new research opportunities across the globe.

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Posted In Foundation, Health Information, Research

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