Bristol-based cleft lip and palate research programme celebrates ten year anniversary

The Cleft Collective, a Bristol-based cleft lip and palate research programme, is marking ten years since it started recruiting and the advances it’s made during that time. 

Every three minutes a baby is born with a cleft of the lip or the palate or both somewhere across the world. In the UK, more than 1000 babies born each year are affected. The Cleft Collective research programme, based at the University of Bristol, aims to answer the three questions most commonly asked by parents whose child has been born with a cleft lip and/or palate; what has caused my child’s cleft? What are the best treatments for my child? Will my child be OK (both now and in the longer term)?

Originally funded by The Scar Free Foundation and more recently The Underwood Trust, over 10,000 participants (3785 babies and young children born with cleft lip and/ or palate and over 6800 of their parents and siblings) have been recruited to date. The study, which is supported by the National Institute for Health and Care Research, is open to recruitment at 16 sites across the UK, including the South West Cleft team based at Bristol Dental Hospital.

In the ten years since the study opened for recruitment it has investigated the causes of cleft, the best treatments for cleft and the long-term wellbeing of those affected. This has included finding out that there is no genetic predisposition for children born with a cleft to do any worse at school than their peers  and investigating how children born with a cleft were affected by the COVID lockdown. Biological samples are collected with information on early environmental and developmental factors. The team behind the study have used these samples and found out that the process by which clefts occur is different for children born with a cleft palate to those born with a cleft lip. As more families join the study, the team will be able to investigate the different causes for cleft lip and cleft palate as well. The study also collects details of surgery and outcomes in speech and psychology.

With data being collected from a high number of participants over a ten year period, the programme now provides a detailed resource for collaborators to research the environmental and genetic determinants of cleft lip and/ or palate, the impacts and experiences of the treatment they receive, and the outcomes for patients and families affected by cleft lip and/ or palate. This resource has already been used in research both at a national and international level.

Hannah Williams, Research Delivery Manager from the Clinical Research Network West of England said:

“It is an incredible achievement that the Cleft Collective is marking ten years since it started recruiting. During that time the team has made a number of advances that will have a significant impact for children born with cleft lip and/or palate and their families. 

“The huge amount of data that the team has also made available as a resource for collaborators means that researchers across the world can utilise the work that has already been done, which will hopefully lead to even more advances. A huge congratulations to the Cleft Collective team on their accomplishments.”

Nadine Steele, a parent participant in the Cleft Collective said:

"We have been participants in the Cleft Collective since July 2015 and feel privileged to be part of such an amazing research programme. Over the years, we have completed lots of questionnaires, which is important because things have changed over time as our child has grown older. It has also been really interesting to hear how our information is being used to help find the answers to the questions we asked as parents when we first found out our baby had a cleft."

Chief Investigator of the Cleft Collective, Dr Yvonne Wren commented:

"This is a massive achievement for the cleft community and it is thanks to the clinical teams around the UK and the patients and their families that we have been able to do this. Working together, we have been able to create a unique resource which can be used to find out more about the causes of cleft lip and palate as well as the best treatments. 

While we have been going for ten years, it is vital that we continue recruitment to the study because the work we need to do requires large samples. Fortunately, because of our NHS and our large population, we are able to recruit lots of families to the study."