An observational study in Rare Disorders, Undiagnosed Disorders and Disorders of Unknown Prevalence, sponsored by Sanford Health. Recruiting at 1 site in United States. Per ClinicalTrials.gov, last updated 2026-10-28.
Sponsored by Sanford Health · Observational
The Coordination of Rare Diseases at Sanford (CoRDS) is an international patient registry that serves as a centralized resource for rare disease research. Individuals affected by rare diseases, undiagnosed conditions, and disorders of unknown prevalence may voluntarily contribute health information to support natural history studies, participant recruitment, and other research efforts. Through partnerships with patient advocacy organizations and researchers worldwide, CoRDS helps connect rare disease communities with research opportunities while advancing knowledge across more than 7,000 rare diseases. Participation is free of charge.
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.
46 studies on the registry are indexed under Hypophosphatasia; 11 are open to participants now.
This study's planned enrollment of 20,000 is above the median of 58 across 24 observational studies indexed under Hypophosphatasia.
Browse Hypophosphatasia studies →Sanford Health is the lead sponsor of 39 studies on the registry; 8 are open to participants now.
Counted across the registry records on this site, refreshed daily.
Unaffected carriers, undiagnosed and those with a rare disease or rare condition.
Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.
Exclusion Criteria:
To accelerate research into rare disorders by connecting individuals who are interested in research and who have been diagnosed with a rare disorder (or a disorder of unknown prevalence, or who are undiagnosed) with researchers who study rare diseases.
Time frame: 100 years
Plan to share: Yes — Deidentified participant data is shared with contracted patient advocacy groups for non-research purposes. Parties interested in accessing data are welcome to apply (cost-free) at http://www.sanfordresearch.org/cords/researchers/.
From the registry record's own update history. This site started tracking changes on Sep 25, 2026; for anything earlier, see the record history on ClinicalTrials.gov ↗
Eligibility is decided by the study team. Share this record with your doctor or contact the team directly.
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