NCT01793168Recruiting
Rare Disease Patient Registry & Natural History Study - Coordination of Rare Diseases at Sanford
Coordination of Rare Diseases at Sanford
Source: ClinicalTrials.gov · Last updated 28 Oct 2026
Brief summary (registry, in English)
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.
- Status (registry)
- Recruiting
- Study type
- Observational
- Enrollment
- 20000 (estimated)
- First submitted
- 13 Feb 2013
- Start date
- 1 Jul 2010
- Primary completion date
- 31 Dec 2100
- Lead sponsor
- Sanford Health
- Diseases
- Myasthenia gravis, Epilepsy, Frontotemporal dementia, Friedreich ataxia, Obesity, Systemic sclerosis (scleroderma), Stroke, Primary biliary cholangitis, Retinitis pigmentosa, Type 1 diabetes, Childhood cancers, Type 2 diabetes, Sarcoma
- NCT number
- NCT01793168
What you commit to
- Study type: Observational
- Planned participants: 20000
- From 1 Jul 2010 to the primary completion date, 31 Dec 2100
- 1 site in 1 country
- Visits and tests: ask the trial team, the registry does not list them
Built from the registry fields of ClinicalTrials.gov. It describes the study, not your situation.
Who cannot take part
Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.
Other illness
- Diagnosis of a disease which is not rare
Who the study is looking for
- Diagnosis of a rare disease, a disease of unknown prevalence, undiagnosed or an unaffected carrier of a rare/uncommon disease
Sex: All · Does not accept healthy volunteers
Sites (1)
Sites in registry order. Pick your city on the disease page to sort them by distance.
| Site | City | Country | Site status |
|---|---|---|---|
| Sanford Health Coordinator of this site? Confirm its status | Sioux Falls | United States | Recruiting |
This page is information, not medical advice. Discuss any trial with your doctor.