Registry for patients with rare diseases

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

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.

Why it matters

Who can join: the full rules

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 it's running

• Sanford Health
  Sioux Falls, South Dakota, United States Recruiting

Study contacts

• Study coordinator: CoRDS Team
• Email: cords@sanfordhealth.org
• Phone: 1-877-658-9192

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.