Cleft is one of the most common congenital abnormalities in the world, affecting 1,200 children born in the UK every year - but little is known about its causes, with opinion divided on best treatments.
The five-year UK research programme, costing £11 million and known as the ‘Cleft Collective’, is the biggest single investment in cleft research anywhere in the world. The Healing Foundation, the country’s leading disfigurement research charity is providing £5 million towards the project, with additional funding from the University of Bristol and NHS partners. Beauty therapy training body VTCT is underpinning the work with a £2 million donation as part of the Healing Foundation contribution.
The University of Bristol has set-up the largest DNA gene bank of its kind, as part of the research programme. Its aim is to collect DNA from all cleft children and their families born in the UK and follow their development through to adulthood.
Professor Jonathan Sandy, lead researcher for the Bristol gene bank and Head of the University of Bristol’s School of Oral and Dental Sciences, said: “We are delighted to welcome HRH The Countess of Wessex to the Cleft Gene Bank.”
“Children born with cleft often face unique challenges. These include speech and language issues, educational difficulties and broader health concerns. We do not know if these problems are caused by the genes that may be responsible for cleft or by other factors, such as lifestyle or ‘environmental’ factors.
“This study will help answer these important questions and develop our understanding about how we can help children to adapt positively to having a cleft as they grow up. It could also solve the ultimate mystery of what causes cleft in the first place.”
Brendan Eley, Chief Executive of the Healing Foundation, added, “By visiting the Healing Foundation Gene Bank and Cohort Study, HRH The Countess of Wessex is signalling her strong support for our world leading programme of cleft research.
“It is a great chance for the researchers, families and funders who are contributing to this ground-breaking work to hear from the Healing Foundation’s Patron, how much their efforts are appreciated and valued.”
Following their baby’s diagnosis of cleft, parents often ask three common questions: What caused my child’s cleft? What are the best treatments for my child? Will my child be OK as he/she grows up?
In order to answer these questions, a team of researchers based in Bristol are recruiting more than 3,000 children and their families into a Birth Cohort Study and a Five-Year-Old Cohort Study of children born with cleft lip and/or palate.
Families are being asked to join the study either after they receive a diagnosis or at their five-year-audit clinic. Families will be asked to provide biological samples, such as saliva, and to complete questionnaires at appropriate time points.
Since August 2013, the research team has been recruiting families into the study, with the help of NHS Cleft Teams throughout the UK.
The Universities of Bristol and Manchester are leading the Cleft Collective programme, in partnership with UWE Bristol, Central Manchester University Hospitals NHS Foundation Trust and the NIHR Medicines for Children Research Network Clinical Trials Unit at the University of Liverpool.
Families who would like to take part in this research or would like more information, should go to cleftcollective.org.uk/