Bardet-Biedl Syndrome Press Release



New Research to Investigate Mental Health in Bardet-Biedl Syndrome (BBS)


Researchers at Aston, Birmingham and Coventry Universities are joining with BBS-UK, and clinicians from the BBS NHS clinics in Birmingham and London, to launch a new study to examine behaviour, thinking-styles and well-being in BBS.


BBS is a genetic syndrome that affects 1 in 100,000 individuals in North America and Europe with approximately three quarters of individuals with BBS having intellectual disabilities. Apart from intellectual disabilities, obesity and progressive visual degeneration characterise BBS.


This two-stage research project is being funded by the Baily Thomas Foundation. The study will describe characteristics that may be more common in people with BBS, and identify how these characteristics are associated with mental health outcomes. Mental health and well-being was one of the leading priorities for research generated by people with BBS and their families during the most recent BBS-UK conference.


By improving our understanding mental health difficulties in BBS, this research may lead to further studies to develop interventions and improve clinical outcomes for people with BBS, as well as providing support for their families.


The study is due to commence in spring 2018 and will be launched at the BBS-UK conference. Further details will follow.


The project is led by Dr Jane Waite from Aston University ( Collaborators on this work include Dr Lukas Foggensteiner, Dr Anne-Marie Walker, Prof Tim Barrett, Prof Phil Beales, Dr Hayley Crawford, Dr Lucy Wilde, Prof. Chris Oliver


An enthusiastic team of research students from Loughborough and Aston Universities are supporting the project (pictured below) whilst they are on placement at the Cerebra Centre for Neurodevelopmental Disorders, University of Birmingham. They are looking forward to getting started on this project soon.


             Amna Karim                     Nailah Merali               Eddie Ingram

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