A cleft is the most common craniofacial abnormality (a problem to do with the skull and face) which babies are born with. 1 in 700 babies are born with a cleft and there are around 1200 new cleft births in the UK each year (CLAPA)

Clefts can significantly impact how babies feed, the development of speech, hearing, and appearance. Thankfully, there are robust systems in place to treat clefts and most people born with a cleft go on to live normal lives.

Read our page on cleft to find out more about what clefts are and how they're treated [coming soon.]

Our Research

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.

What we've done

The Cleft Collective has had a massive impact on cleft research internationally.

Over 67 peer-reviewed papers and 4 book chapters have been published on everything from educational attainment to whether antibiotics promote healing after surgery. Findings been shared in 127 oral conference presentations, 82 talks and keynote speeches, 21 workshops, and 40 posters.

From Oslo to Iowa, researchers are using the gene bank and questionnaire answers to direct their research. More and more scientists are getting involved every day – the number of requests to use the data has gone up every year since 2013!

You can find all of the publications so far on the Cleft Collective’s website: Publications

The future of our cleft research

In early 2023, we handed over management of the Cleft Gene Bank and Cohort Study to the Underwood Trust.

This grant from the Underwood Trust ensures that the Cleft Collective will continue to run for another 5 years. This amazing news means that the project is still recruiting participants from cleft centres around the UK.

If you’d like to get involved in the study as a participant, you can find out more on the Cleft Collective’s website: Families - How can I get involved?

Researchers from any discipline can access the Collective’s impressive dataset by submitting a project proposal. The Cleft Collective’s website has all the information you need, including policies and examples of past project proposals.

To find out more and use the data for yourself, visit the Cleft Collective website: Professionals - How can I get involved?