Registry for patients with rare diseases
Coordination of Rare Diseases at Sanford
This study is creating a central registry for people with rare diseases to help connect them with researchers and improve treatments.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 20000 (estimated) |
| Sex | All |
| Sponsor | Sanford Health Academic / other |
| Locations | 2 sites (Sioux Falls, South Dakota and 1 other locations) |
| Trial ID | NCT01793168 on ClinicalTrials.gov |
What this trial studies
The Coordination of Rare Diseases at Sanford (CoRDS) is an observational program based at Sanford Research in Sioux Falls, South Dakota, that creates a centralized international registry for individuals with rare diseases. It collects comprehensive contact, sociodemographic, and health information from participants, which is then linked to a unique coded identifier. This registry facilitates connections between patients and researchers, aiming to advance treatments and cures for over 7,000 rare diseases. Participants can choose to share their de-identified information with patient advocacy groups to further research efforts.
Who should consider this trial
Good fit: Ideal candidates include individuals diagnosed with a rare disease, those with undiagnosed conditions, or carriers of rare/uncommon diseases.
Not a fit: Patients diagnosed with diseases that are not classified as rare will not benefit from this registry.
Why it matters
Potential benefit: If successful, this registry could significantly enhance the understanding and treatment of rare diseases by providing valuable data to researchers.
How similar studies have performed: Other studies utilizing patient registries for rare diseases have shown success in advancing research and treatment options.
Eligibility criteria
Show full inclusion / exclusion 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
Where this trial is running
Sioux Falls, South Dakota and 1 other locations
- Sanford Health — Sioux Falls, South Dakota, United States (Recruiting)
- Online Patient Enrollment System — Sydney, Australia (Recruiting)
Study contacts
- Study coordinator: CoRDS Team
- Email: cords@sanfordhealth.org
- Phone: 1-877-658-9192
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.