Rare Diseases Clinical Trial
— PRaUDOfficial title:
Rare and Undiagnosed Disease Research Biorepository
Verified date | March 2024 |
Source | Mayo Clinic |
Contact | n/a |
Is FDA regulated | No |
Health authority | |
Study type | Observational [Patient Registry] |
This research study is being done to find markers and identify causes of rare and undiagnosed diseases by analyzing patient's DNA (i.e., genetic material), RNA, plasma, urine, tissues, or other samples that could be informative of symptoms. Researchers are creating a biobank (library) of samples and information to learn more about treating rare and undiagnosed diseases.
Status | Enrolling by invitation |
Enrollment | 5000 |
Est. completion date | November 2025 |
Est. primary completion date | November 2025 |
Accepts healthy volunteers | Accepts Healthy Volunteers |
Gender | All |
Age group | N/A and older |
Eligibility | Inclusion Criteria: - Has Mayo Clinic or other medical health system ID, or another unique identifier - Able to provide informed consent Must meet one of the following: - Individual must have evidence of a rare disease or a suspected genetic disorder as determined by a provider or genetic counselor - Biological family member of an enrolled individual Exclusion Criteria: - Individuals who have situations that would limit compliance with the study requirements - Institutionalized (i.e. Federal Medical Prison) |
Country | Name | City | State |
---|---|---|---|
United States | Mayo Clinic in Florida | Jacksonville | Florida |
United States | Mayo Clinic in Rochester | Rochester | Minnesota |
United States | Mayo Clinic in Arizona | Scottsdale | Arizona |
Lead Sponsor | Collaborator |
---|---|
Mayo Clinic |
United States,
Type | Measure | Description | Time frame | Safety issue |
---|---|---|---|---|
Primary | Enrollment of Study Participants | 5,000 participants to be accrued | 5 years | |
Secondary | Body-of-Knowledge | To prospectively follow the cohort of Rare and Undiagnosed Disease Biorepository participants to ascertain new health outcomes via medical records and patient contact, update risk factor data, and collect additional biologic specimens. | 5 years | |
Secondary | Discovery of Disease Mechanisms and Therapeutic Approaches | To facilitate research projects using the Rare and Undiagnosed Disease Biobank to identify underlying disease mechanisms and potential therapeutic approaches. | 5 years | |
Secondary | Diagnostic Yield | To change the rate of diagnosis and level of care for patients with rare and undiagnosed diseases through collaborations with clinical investigators and researchers at Mayo Clinic and globally. | 5 years |
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