Cleft lip and/or palate is the most common facial birth defect. Established in 2012 and hosted by the University of Bristol, The Scar Free Foundation Cleft Gene Bank and Cohort Study collects biological samples of children born with a cleft and their parents, along with information on demographic, lifestyle and psychological data. With more than 9,000 individuals 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.

A cleft of the lip and/or palate occurs in approximately 1 in 700 births, with around 1,000 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.

With the help of every cleft team in the UK, up to 10,000 individuals are being recruited into the study.

Families are asked to contribute biological samples (such as saliva) and complete a number of questionnaires at important time points during their child’s development. This information is stored anonymously and will be analysed in the future to help answer the three key questions that families ask:

  • What has caused my child’s cleft?
  • What are the best treatments for my child?
  • Will my child be OK?