Why is a BBS registry important?
Bardet-Biedl Syndrome (BBS) is thought to affect approximately 2,500 people in the United States. Because BBS is relatively rare and individuals with the disease are spread out across the world, no single medical center has the expertise to fully address the needs of individuals with BBS or to develop much needed new treatments. CRIBBS serves as a valuable tool to learn more about BBS and its impact on the health of a person. Information gathered in CRIBBS will be used to help families better understand the condition, to help healthcare providers provide timely preventative and comprehensive care, and to foster scientific efforts in understanding this complex disorder.
How do I register for CRIBBS?
Clicking on this registration link will bring you to the registration page. You will be asked several simple questions so that we can contact you. We will not request confidential information such as social security numbers or driver’s license numbers.
What information will I have to provide to participate in CRIBBS?
Bardet-Biedl Syndrome (BBS) affects each person differently. To better understand how BBS affects you specifically, a member of our team will conduct a telephone interview that takes 90 to 120 minutes. In addition, we will ask you to complete two written assessment forms at your leisure. We will also ask you to sign medical release forms that allow us to obtain medical records from your healthcare providers.
We will not ask for confidential information such as social security numbers or driver’s license numbers.
Who can see my information?
Your privacy is important to us. Your health information will be assigned a study number that will replace any information that may identify you. Medical records will be stored in a secured location and only individuals directly involved in CRIBBS will have access your information. Your information will not be shared with private organizations, such as insurance companies. Information will be compiled using the study identification numbers and shared with researchers and scientists trying to better understand BBS.
How is CRIBBS funded?
CRIBBS is funded by the generous support of the BBS Family Association, Bright Light to BBS, and the Development Office at the Marshfield Clinic Research Foundation. Please click here if you would like to help support CRIBBS.
How often will the CRIBBS research staff contact me?
One important purpose of the registry is to monitor the ongoing health of individuals with BBS over time. As such, we will contact you annually to get an update on your health. In addition, you will be asked to repeat the two written assessments completed upon CRIBBS enrollment and we will contact your healthcare providers to obtain updated health records. If at any time, you wish to withdraw participation from CRIBBS, you are free to do so and you will no longer be contacted by CRIBBS staff.
Will I be contacted about participating in research studies?
Yes, we will alert you if researchers are seeking volunteers for research studies. We will not give your name or contact information to the researcher, but we will provide you the contact information for the researcher and provide you a brief summary of the study.
How does participation in CRIBBS help me or my child?
Participation in CRIBBS will help us learn more about the many ways BBS impacts the life and health of individuals. We will share this information through publications for the public and in professional journals. We believe that such knowledge will spark the interest of scientists, private industry, and government agencies to foster high quality care and the development of new and effective treatment strategies for individuals with BBS.
Have you heard of the BBS clinic?
Marshfield Clinic offers a comprehensive multidisciplinary specialty care clinic for the treatment of Bardet-Biedl Syndrome. Currently there is no other clinic nationally providing comprehensive clinical evaluations and individualized treatment care recommendations for this rare condition.
Do I need a physician referral to attend the specialty BBS clinic?
No. Patients may self-refer to the BBS clinic. You will be asked a few simple questions so we are able to contact you. Marshfield Clinic contracts with many insurance plans and networks. The Clinic will work with your health insurance company to complete prior authorization when it is required.