Coordination of Rare Diseases at Sanford
Sanford Health
Summary
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access. Visit sanfordresearch.org/CoRDS to enroll.
Description
CoRDS collects contact, sociodemographic and health information about participants. This information is entered into CoRDS and linked to a unique coded identifier. Below are some examples of information requested on the Questionnaire that will be entered into CoRDS: * Contact information: Name, Mailing Address, Phone Number, Email Address * Sociodemographic information: Date of Birth, Place of Birth, Sex, Gender, Ethnicity * Health information: Family History, Information related to Diagnosis De-identified information in CoRDS will be made available to researchers, if they have obtained appr…
Eligibility
- Age range
- Not specified
- Sex
- All
- Healthy volunteers
- No
Inclusion Criteria: * Diagnosis of a rare disease, a disease of unknown prevalence, undiagnosed or an unaffected carrier of a rare/uncommon disease Exclusion Criteria: * Diagnosis of a disease which is not rare
Locations (2)
- Sanford HealthSioux Falls, South Dakota
- Online Patient Enrollment SystemSydney