The Cleft Collective
An initiative of the UK-based charity the Scar Free Foundation, and supported entirely by voluntary donations, The Cleft Collective is the largest cleft lip and palate research programme in the world. The research programme was officially launched in 2012.
Although a cleft in the lip and/or the palate is relatively common, affecting around 1,000 newborns per year in the UK, little is known about what causes it to happen. For parents whose child has received a diagnosis of cleft, feelings of guilt and grief are common, and parents often worry about their child’s future. While care for children born with a cleft has improved considerably over recent decades, the burden of ongoing cleft treatment can still have a significant impact on the family, and opinions remain divided over which are the best treatments.
The aim of The Cleft Collective is to make substantial progress toward answering three key questions which parents often ask:
- What caused my child’s cleft?
- What are the best treatments for my child?
- Will my child be OK as he/she grows up?
The Cleft Collective Cohort Studies
A cohort study involves recruiting families to participate in the research from an early stage, and then keeping in touch with them as their child grows up.
Over 3,000 families are being invited to participate in The Cleft Collective Cohort Studies. Cleft teams will invite eligible families to take part either before or after the birth of their child, or when their child attends their five-year review clinic. Families will be asked to provide biological samples (such as saliva) and to complete questionnaires at key points during their child’s development. We are also asking permission to access the families’ medical and educational records, and are running a number of additional studies, including a Speech and Language study and a 3D Facial Imaging study.
We hope the information we collect from families will help us to identify some of the biological and environmental causes for cleft. We also hope that keeping track of the family’s wellbeing and the child’s development will help us to improve psychological support for families and individuals who have been affected.
Although the research team is based in Bristol, families from across the UK will be invited to participate in the studies. We are extremely grateful to all of the families who are already taking part in this important research, and to the NHS cleft teams. Thank you also to CLAPA and their members for their continued support of this ambitious project.
Taking part in the research
If a child with cleft is born, or turns five within the recruitment period, the child and their family members should be eligible to participate in the main Cohort Studies. If this does not apply to you, there are still many ways you can become involved in The Cleft Collective research programme.
We often run smaller studies to find out more about a particular group of people or a specific topic. Some of our recent projects have included working with fathers of children with cleft, adults with cleft and siblings of children with cleft. Thank you to everyone who has participated in all of our studies to date.
Patient and Public Involvement (PPI)
You can also become involved in the research process itself. For example, you can help us to choose the most important research questions, help us to shape our research protocols and support us to design our materials. This ensures that the research we are carrying out is appropriate and relevant, and will make a real difference to people affected by cleft. To find out more about the general PPI process, please visit www.invo.org.uk.
Cleft Image Bank
We collect photographs of families, young people and adults who have been affected by cleft, to give a real-life feel to our work. We use these photographs in our conference presentations, on our website and in all of our materials. Thank you to everyone who has already sent their photographs to us and spotted their children in the media!
We send out newsletters twice a year to everyone on our mailing list. These include updates on the progress of the project, reports on our research findings and opportunities to take part in studies and activities. To sign up to receive our newsletter, please contact us.
If you are a researcher, health professional or student, please contact us about opportunities for collaboration.
Find out more
To find out more about The Cleft Collective, or to express an interest in taking part in the programme, please contact the research team in Bristol:
Tel: +44 (0)117 331 0025