Market Research: Journey, Burden and Potential New Therapies in Bardet Biedl Syndrome

$150 Honorarium

This market research study is being conducted by Engage Health (a health research firm) who is working with a company who is helping to develop a potential therapy for Bardet Biedl Syndrome (BBS).  The research is being done to obtain a better understanding of BBS, including how it is diagnosed, your journey, and your thoughts on a potential new therapy.

To be eligible you must be:

  • A person diagnosed with Bardet Biedl Syndrome who is age 18 years or older OR the parent/legal guardian of a person who has been diagnosed with BBS
  • Able to read, write and communicate in English, and grant informed consent
  • Willing to complete an RSVP, and to participate in a 60-minute telephone interview, which will be conducted in English

Involvement consists of filling out the RSVP, answering a few short questions to ensure you qualify and providing times you would be available for a telephone interview. Based on this you may be eligible to participate in a 60-minute telephone interview, for which you will be paid a $150 USD honorarium once the interview is completed. No preparation is required to participate.

If you would like to participate, please:

  • Go to Journey, Burden and Potential New Therapies in Bardet-Biedl Syndrome
  • At the screen, please check the box that says “Check if you have no code” to proceed to the RSVP
  • Fill out the survey and RSVP with dates and times that you are available. Please note that times outside of standard business hours are available. 
  • Once you have completed the RSVP, Engage Health will contact you to confirm the date and time of your telephone interview, or to notify you that the interviews are full, if that is the case.


If you would like to make other patients or families who are impacted by Bardet-Biedl Syndrome aware of this research, please do so, but remember that the interviews are being conducted on a very limited basis, and participation is first come, first served.  Please respond quickly if you would like to participate as slots are filling fast!


Thank you!