The Clinical Registry Investigating Bardet-Biedl Syndrome (CRIBBS) reflects the time, energy, and vision of the BBS community, including patients, caregivers, families, and researchers, committed to improving the understanding of this complex disease. CRIBBS was designed to promote scientific efforts that touch the lives of and improve healthcare for individuals affected by BBS.

According to Bardet-Biedl Syndrome Family Association President Tim Ogden, "Building and maintaining CRIBBS is a top priority of the association. There's nothing we could do to have a greater impact on research and treatment development."

BBS Multispecialty Clinic

The BBS multispecialty clinic will be available at Marshfield Medical Center in Marshfield, Wisconsin during these dates in 2023:

  • Dates to be announced soon


CRIBBS Worldwide Enrollment

CRIBBS has participants spread across six of the seven continents. Put another way, that’s 725+ CRIBBS participants from 40 countries and counting. Watch the following video to see how far-reaching the CRIBBS database really is.

CRIBBS 2022 Enrollment Goal

In 2022, we would like to increase the number of active participants enrolled in CRIBBS to 750. As of November 30, 2022, we're only 10 participants away from achieving that goal!