The Cleft Collective wins prestigious award for excellent patient engagement

We are thrilled that The Scar Free Foundation Cleft Gene Bank and Cohort Study, also known as The Cleft Collective, funded by The Scar Free Foundation, has won the Royal College of Paediatric and Child Health/NIHR Paediatric Involvement and Engagement in Research (PIER) prize, which will be presented in April.

This prize was awarded to The Cleft Collective for significant contributions to excellent patient engagement with clinical studies, in recognition of the outstanding work they have been doing with individuals who are affected by cleft, either themselves or as parents, and the Cleft Lip and Palate Association (CLAPA). The Cleft Collective team has worked hard to ensure that Patient and Public Involvement is integral to the important research they are carrying out into the causes of cleft lip and palate, and the outcomes for those affected.

Established in 2012 and hosted by the University of Bristol, The Cleft Collective collects biological samples of children born with a cleft and their parents, along with information on demographic, lifestyle and psychological data. With over 3,000 families now participating in the study, making it one of the world’s largest biobanks, the study is providing unprecedented insight into what causes cleft, the best treatments and how a cleft might affect a child as they develop.

Cleft lip and/or palate is a global challenge affecting approximately 1 in 700 live births. Every three minutes a child with some form of clefting is born, with around 1,200 new cleft births in the UK each year. A cleft can significantly impact feeding, the development of speech, appearance, hearing and other aspects of a child’s development, yet the reasons why babies are born with a cleft remains unknown, but both genetic and environmental factors are involved.

We are so proud that The Cleft Collective’s fantastic work and achievements have been recognised with this very well-deserved award. Read more about the Cleft Collective’s pioneering work here: http://www.bristol.ac.uk/dental/cleft-collective/