Research Study: Person Characteristics and Well-being in Bardet-Biedl Syndrome

Posted on 12 May 2022

Individuals with Bardet-Biedl syndrome (BBS) report experiencing emotional difficulties in addition to physical health difficulties. We want to find out more about what factors impact well-being in BBS.

Researchers at Aston University are running a research project collecting questionnaires and asking individuals with BBS to do some tasks. We hope it will help doctors and healthcare services to know which person characteristics are related to well-being in BBS.

We are hoping to recruit 120 individuals with BBS or a parent/carer/person who supports them to complete some questionnaires and interviews.

The questionnaire takes approximately 45 minutes to complete and families will receive a £5 voucher for their participation. Please note: all families who have previously taken part will be contacted soon about receiving their voucher.

How can families become involved?

If you would like to learn more about what is involved in the study and register your interest, you can do this by:

Registering an interest does not commit you to taking part. You will have a chance to make your decision about getting involved once you have read the information sheets.