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Rare Disease Patient Registry & Natural History Study - Coordination of Rare Diseases at Sanford
Coordination of Rare Diseases at Sanford
Who can join
All ages · All sexes
Full eligibility criteria
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
About the study
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.
Sponsor: Sanford Health · Participants: 20,000 · Started: 2010-07
Contact the study team
- CoRDS Team · Phone: 1-877-658-9192
Official record on ClinicalTrials.gov — NCT01793168
Locations in the U.S.
| South Dakota | Sanford Health, Sioux Falls |
Conditions
- Narcolepsy
- Disorders of Excessive Somnolence
- Idiopathic Hypersomnia
- Leiomyosarcoma
- Hyperacusis
- Williams Syndrome
- Lyme Disease
- Myasthenia Gravis
- Spinocerebellar Ataxias
- Muscle Spasticity
- Multiple System Atrophy
- Friedreich Ataxia
- Hearing Disorders and Deafness
- Hemophagocytic Lymphohistiocytosis
- Frontotemporal Dementia
- Myoclonus
- Retinitis Pigmentosa
- Biliary Liver Cirrhosis
- Glycogen Storage Disease
- Recurrent respiratory papillomatosis
- Esophageal Achalasia
- Rectal Fistula
- Diffuse Scleroderma
- Short Bowel Syndrome
- X-Linked Bulbo-Spinal Atrophy
- Mitochondrial Diseases
- Biliary Atresia
- Turcot syndrome
- Leukodystrophies
- Rare Diseases
- Ataxia
- Neuronal Ceroid-Lipofuscinoses
- Hereditary Sensory and Autonomic Neuropathies
From ClinicalTrials.gov, data retrieved Sep 29, 2026. Each study sets its own eligibility; the study team decides who can join.