Rare Disease Patient Registry & Natural History Study - Coordination of Rare Diseases at Sanford

Plain-language summary

This is a study that sets up a patient registry for people with rare diseases and follows the natural history (course over time) of these conditions. It is enrolling people with a diagnosed rare disease, an undiagnosed condition, or who are carriers of a rare disease. It is being carried out as a study without an assigned phase and is currently recruiting participants.

The summary above is a plain-language rendering of the official record. The original English title is shown for reference.

Trial details

Phase

N/A

Status

Recruiting

Sponsor

Sanford Health

Start date

7/1/2010

Estimated completion

12/1/2100

Countries

United States, Australia

Related genes

Locations

• Sioux Falls, United States
• Sydney, Australia

Eligibility criteria

Criteria are reproduced from the ClinicalTrials.gov record in the original English. Only the trial team can determine eligibility.

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