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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
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.
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
- 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
- Nerve Degeneration
- Rare Diseases
- Ataxia
- Neuronal Ceroid-Lipofuscinoses
- Hereditary Sensory and Autonomic Neuropathies
From ClinicalTrials.gov, data retrieved Nov 15, 2026. Each study sets its own eligibility; the study team decides who can join.