All children born with a cleft undergo at least one surgical procedure. This means that almost every child with a cleft will grow up with scar tissue in their mouth and on their lip. Some children scar well, but others scar badly. We wanted to find out why and learn more about what causes cleft in the first place.
In 2012, we established the Scar Free Foundation Cleft Gene Bank and Cohort Study, also known as the Cleft Collective. Hosted at the University of Bristol, this enormous study collects genetic samples (saliva) from children with cleft and their parents. Our researchers asked questions about health, lifestyle, and demographics, and followed up with the families involved at key moments to learn more about how the children were developing. All this information is stored anonymously.
To date, over 10,000 people have taken part. This makes it one of the world’s largest biobanks!
Using this enormous dataset, researchers can dig deeper into what causes cleft, what the best treatments are, and how a cleft affects development.