Bardet-Biedl
CLINICAL REGISTRY
Clinical REGISTRY INVESTIGATING
CRIBBS
(For english speakers)
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.
Frequently Asked Questions :
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 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.
Comment référer mon enfant/moi-même à la clinique BBS ?
En cliquant sur ce lien , vous accéderez au questionnaire de référencement. Veuillez télécopier le 715-387-5244, envoyer un courriel ( suda.sonia@marshfieldclinic.org ) ou envoyer le formulaire dûment rempli à :
Sonia Suda
1000 N Oak Ave - GR3
Marshfield, WI 54449
COBBALT
COhorte Bardet-Biedl et Alström Translationnelle
(In France)
The principle is to collect clinical data from as many patients as possible in order to better understand the natural history of the disease in its most classic manifestations (vision, weight, renal function) but also to be able to identify rarer or even unknown manifestations. A quality of life study is also being carried out as well as the collection of biological samples for research purposes.
The promotion of the study is under the responsibility of the University Hospital of Strasbourg and the principal investigator is Pr Hélène Dollfus. The collection of consent for the study (signature for participation) must be done on site (for the moment, a compulsory visit to Strasbourg), but afterwards the data over 5 years can be collected remotely. This study is very important because it will allow to identify the criteria on which future clinical trials can be based and also to identify more precisely the known or still poorly known characteristics of the disease and also the needs of the patients.
The team of the University Hospital of Strasbourg is counting on the participation of all and awaits your call at 06 35 34 09 00 or 03 69 55 19 62 or your message at cobbalt@chru-strasbourg.fr or nathalie.goetz@chru-strasbourg.fr in order to inform you at best. Reference Centre for Rare Diseases in Ophthalmological Genetics CARGO - IGMA1, Place de l'Hôpital 67091 STRASBOURG Cedex.