We recognize that you trust us to keep this information confidential. As each of you know, we collect detailed information from individuals by annual telephone interviews as well as by HIPAA authorized medical release of health information including laboratory and imaging studies, genetic testing results and clinic visits. The paper is now available for you to download and read without fees for the next 40 days.ĬRIBBS has grown to be an impressive repository of information. I informed you that the CRIBBS database documents that this phenomenon called situs inversus or heterotaxy (depending on organ placement) is at least 170 fold higher in BBS compared to the general population. At the meeting I presented information regarding abnormal positioning of organs in the chest and abdomen in some individuals with BBS.

It was impressive to see the unity and the effort that was put forward. First, a fantastic BBS conference was sponsored by the BBS Foundation in the Greater Salt Lake City, Utah area. In 2018 several important events took place. The ribbons represent DNA strands but also symbolize the need to work together to bring light to BBS. The CRIBBS logo is a heart symbolizing hope and ribbons flowing down from the heart. The mission of CRIBBS is to promote research to improve the health and quality of life of individuals affected by BBS. There are currently 454 participants fully enrolled. The Clinical Registry Investigating BBS (CRIBBS) is an international registry with participants from 36 different countries and every region of the world. There are several questions near the end of the newsletter that I would deeply appreciate responses from adults with BBS. In this quarterly newsletter I would like to update you on some CRIBBS activities, introduce you to a new friend and share with you the vision of CRIBBS moving forward into 2019.

Bbs tools 2018