NCT02329210 Clinical Registry Investigating Bardet-Biedl Syndrome
| NCT ID | NCT02329210 |
| Status | Recruiting |
| Phase | — |
| Sponsor | Marshfield Clinic Research Foundation |
| Condition | Bardet-Biedl Syndrome |
| Study Type | OBSERVATIONAL |
| Enrollment | 1,200 participants |
| Start Date | 2014-06 |
| Primary Completion | 2030-12 |
Eligibility & Interventions
Eligibility Fast-Check
Enter your details for a quick preliminary check. This does not replace medical advice.
What to Expect as a Participant
This is an observational study. You will not receive an experimental treatment; researchers will collect data based on your existing condition or standard treatment.
This trial targets 1,200 participants in total. It began in 2014-06 with a primary completion date of 2030-12.
⚠ This information is for research awareness only. Always consult your physician before joining any clinical trial. Participation is voluntary and you may withdraw at any time.
Brief Summary
Bardet-Biedl Syndrome (BBS) is a rare genetic disorder associated with a vast array of symptoms. The features of BBS are highly variable, even between siblings, making long-term follow-up and centralization of information vital to better understanding this complex disease and designing effective treatments. Marshfield Clinic has developed the Clinical Registry Investigating Bardet-Biedl Syndrome (CRIBBS) to gather comprehensive health information from patients diagnosed with BBS in a single repository. This information will be used to inform patients, families, and physicians about the complex features of BBS and will serve as a platform for researchers to develop effective and targeted treatment strategies for patients with BBS. CRIBBS is a web-based, confidential database and the privacy of patients enrolled in the registry will always be respected. Information maintained in the database will be identifiable only by an assigned study identification number, not by name. The registry strictly complies with HIPAA regulations. CRIBBS participants may be contacted periodically with information regarding clinical trials or research studies, but participation is entirely voluntary. CRIBBS will bring together complex genetic and clinical information from BBS patients to accelerate research into effective treatments, attract additional researchers, and make it easier for researchers to identify patients and find funding for innovative studies.
Eligibility Criteria
Inclusion Criteria: (1) Genetic confirmation of BBS or (2) manifest four primary features of BBS or (3) manifest three primary features plus two secondary features. Primary Features: Rod-Cone dystrophy, Polydactyly, Obesity, Learning disabilities, Hypogonadism in males, Renal anomalies Secondary Features: Speech disorder/delay, Strabismus/cataracts/astigmatism, Brachydactyly/syndactyly, Developmental delay, Polyuria/polydipsia, Ataxia/poor coordination/imbalance, Mild spasticity (especially lower extremities), Left ventricular hypertrophy/congenital heart disease, Hepatic fibrosis Exclusion Criteria: Individuals not meeting established genetic and/or phenotypic criteria
Contact & Investigator
Robert M Haws, M.D.
PRINCIPAL INVESTIGATOR
Marshfield Clinic Research Institute
Frequently Asked Questions
Who can join the NCT02329210 clinical trial?
This trial is open to participants of all sexes, studying Bardet-Biedl Syndrome. Full inclusion and exclusion criteria are listed in the Eligibility Criteria section. Always confirm your eligibility with the research team before applying.
Is NCT02329210 currently recruiting?
Yes, NCT02329210 is actively recruiting participants. Contact the research team at cribbs@mcrf.mfldclin.edu for enrollment information.
Where is the NCT02329210 trial being conducted?
This trial is being conducted at Marshfield, United States.
Who is sponsoring the NCT02329210 clinical trial?
NCT02329210 is sponsored by Marshfield Clinic Research Foundation. The principal investigator is Robert M Haws, M.D. at Marshfield Clinic Research Institute. The trial plans to enroll 1,200 participants.