Clinical Registry Investigating Bardet-Biedl Syndrome (CRIBBS)
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 nationwide to accelerate research into effective treatments, attract additional researchers, and make it easier for researchers to identify patients and find funding for innovative studies. You can help doctors and researchers learn more about BBS and test possible treatments for the disease by enrolling in CRIBBS today.
Bardet-Biedl Syndrome Clinical Registry Project
The CRIBBS registry is made possible through gifts given to the BBS Research Fund at Marshfield Clinic Research Foundation (MCRF). Please consider supporting the registry by making a gift to BBS Research at MCRF by following the link below. For questions about making a gift, please contact Jill Kurszewski, Development Officer – Research at 715-387-9247 or firstname.lastname@example.org.