Clinical Registry Investigating Bardet-Biedl Syndrome

Conditions

• Bardet-Biedl Syndrome

Eligibility Criteria

Sex

ALL

Age

N/A - N/A

Healthy Volunteers

Not accepted

Study Details

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.

Key Dates

Start date

Jun 30, 2014

Status verified

Jul 2022

Primary completion

Dec 31, 2030

Completion

Dec 31, 2030

Study Design

Enrollment

1,200 participants (estimated)

Primary Outcome Measure

Clinical Registry Investigating Bardet-Biedl Syndrome [ Time Frame: 15 years ]

Central Contacts

• Deborah L Johnson
  877-594-3499
  [email protected]
• Robert M Haws, M.D.
  715-387-5092
  [email protected]

Locations (1)

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