The Cleft Collective is a UK-wide research programme investigating the causes of cleft, the best treatments for cleft and the long-term wellbeing of those affected.
It was launched in 2012 and is one of the largest cleft lip and palate research programme in the world.
About the Cleft Collective
While cleft is relatively common, affecting around one in 700 births 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 they grow up?
About the Cleft Collective Study
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. They will also seek permission to access the families’ medical and educational records, and run a number of additional studies, including a Speech and Language study and a 3D Facial Imaging study.
The Cleft Collective hopes that the information collected from families will help to identify some of the biological and environmental causes for cleft. They also hope that keeping track of the family’s wellbeing and the child’s development will help 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. The Cleft Collective are extremely grateful to all of the families who are already taking part in this important research, and to the NHS cleft teams.
Get involved with the Cleft Collective
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. Talk to your Cleft Team for more information.
If this does not apply to you, there are still many ways you can become involved in The Cleft Collective research programme.
Sub-studies
The Cleft Collective 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 learn more about this group, contact CLAPA Involvement Manager Gillian McCarthy at [email protected].
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Cleft Image Bank
The Cleft Collective collects photographs of families, young people and adults who have been affected by cleft, to give a real-life feel to their work. They use these photographs in conference presentations, on their website and in all of their materials. Thank you to everyone who has already sent their photographs to the Cleft Collective and spotted their children in the media!
Mailing list
The Cleft Collective sends out newsletters twice a year to everyone on their 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. Read their latest newsletters.
Collaboration
If you are a researcher, health professional or student, please contact the Cleft Collective about opportunities for collaboration.
Using the Cleft Collective’s Data
The Cleft Collective is a large-scale multigenerational cohort study of children born with cleft lip and/or palate (CL/P). More than 2500 families have been recruited from all 16 CL/P regional NHS clinical centres since 2013; they have contributed biological samples, completed questionnaires as well as speech and language assessments across various time points. Furthermore, with parents’ consent, the Cleft Collective has accessed medical and educational records through data linkage. This resource has been established to provide data from multiple disciplines with the aim of answering your research questions relating to cleft.
Contact the Cleft Collective directly at email: [email protected] to discuss your research question further as their team is there to support you in any way they can. Where appropriate, they may also be able to discuss the potential of setting up a nested study with you, where new data is collected on a subsample of the cohort.