Finding studies
Finding studies
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CoRDS Team
CONTACT
Lead
Sanford Health
With
The Coordination of Rare Diseases at Sanford (CoRDS) is an international, longitudinal patient registry for individuals affected by rare diseases, undiagnosed conditions, and disorders of unknown prevalence. Based at Sanford Research in Sioux Falls, South Dakota, CoRDS serves as a centralized resource that collects participant-reported demographic, contact, family history, and health information to support rare disease research. Individuals with rare diseases, family members, caregivers, and carriers may enroll in the registry. Information collected through CoRDS supports research activities including natural history studies, epidemiologic investigations, characterization of disease burden, feasibility assessments, participant recruitment, and other efforts to advance understanding of rare diseases. Registry data may be made available to qualified researchers following appropriate institutional review processes. CoRDS provides researchers access to a broad and geographically diverse population of individuals affected by rare diseases, helping facilitate study planning, participant identification, recruitment, and research collaboration. Access to CoRDS data is provided at no cost to qualified researchers. CoRDS collaborates with rare disease patient advocacy organizations to increase awareness of the registry, support patient engagement, and help connect researchers with rare disease communities. CoRDS may also share select participant information with participating advocacy organizations when authorized by the participant and in accordance with applicable registry policies and agreements. Participants may choose to be contacted regarding research opportunities that may be relevant to their condition. CoRDS serves as a resource for patients, families, researchers, healthcare professionals, patient advocacy organizations, and other stakeholders working to advance research across thousands of rare diseases. Participation in CoRDS is voluntary and free of charge. Participants may withdraw from the registry at any time. CoRDS conducts periodic follow-up with participants to maintain current information, confirm continued participation, and support ongoing research efforts. For participants enrolled by a parent or legally authorized representative, CoRDS will seek consent directly from the participant upon reaching the age of majority, as applicable.
Age
Any age
Sex
ALL
Healthy volunteers
Not accepted