At Sanford Research, we are committed to finding cures and advancing therapies for rare diseases. There are approximately 7,000 rare diseases affecting 25 million Americans and 350 million people worldwide. Many new developments in the diagnosis and treatment of human disease rely on research that involves the collection and analysis of data, but research into rare diseases is challenging due to a lack of information, the low numbers and geographic spread of individuals affected by rare disease, and data collected and stored in separate databases. To help address these challenges and advance research into rare diseases, we established the Coordination of Rare Diseases at Sanford (CoRDS).
CoRDS is a central patient registry for all rare diseases. CoRDS was established to collect contact and clinical data on rare diseases and to provide a mechanism to connect patients interested in participating in research with the researchers who are conducting the studies or clinical trials on rare diseases. Coordinating a patient registry for multiple and potentially all rare diseases offers potential to patients and their families, patient advocacy groups, and researchers studying rare diseases.