International Clinical Registry for Bardet-Biedl Syndrome to Collect Health and Genetic Information for Research and Treatment Development

What this Trial Is About

Bardet-Biedl Syndrome BBS is a rare genetic disorder with a wide range of symptoms that can vary greatly even among family members. Researchers have created the Clinical Registry Investigating Bardet-Biedl Syndrome CRIBBS to collect detailed health information from people diagnosed with BBS in one secure database. This helps families, doctors, and researchers better understand the disease and supports the development of targeted treatments for BBS. CRIBBS is a confidential, web-based registry where participants provide health details through interviews and surveys, often conducted by phone or online due to geographic distances. Participants or their guardians complete health questionnaires and behavioral surveys initially and annually. Medical records are also collected with permission to enrich the data. The registry operates under strict privacy rules, using unique identifiers instead of names and following HIPAA regulations. Participants help by sharing their health information regularly, which is securely stored and used to study the natural history of BBS and support future research. The registry is overseen by an institutional review board and a board of directors to guide its focus. CRIBBS aims to accelerate research for effective treatments by gathering and sharing de-identified data with approved researchers worldwide.

Clinical Registry Investigating Bardet-Biedl Syndrome