University of Bristol: One of the largest cleft research studies in the world welcomes its 10,000th participant
One in 700 children are born with a cleft of either the lip or palate or both. In the UK, these children are treated by specialist cleft centres in hospitals with additional support from community-based services. They may have multiple operations throughout their lives and receive support from specialist nurses, surgeons, psychologists, speech and language therapists, audiologists, dentists, and orthodontists, from birth until at least age 20, with cleft services available throughout adulthood for those who need it.
The study has been running for ten years, funded by The Scar Free Foundation, and has recruited over 3,500 children as well as their parents and other children in the family. Genetic information from saliva and blood samples has been collected as well as thousands of questionnaires. New funding from The Underwood Trust will allow the study to continue for another five years enabling more families to participate and children born with a cleft to be followed up for longer. This will help the Cleft Collective team understand how their cleft and the treatment they receive makes a difference to their lives, with a particular focus on their speech, their appearance and their well-being.
The Cleft Collective’s 10,000th participant is five-year-old Elsie. Elsie was diagnosed with a bilateral cleft lip and palate at her mother’s 20-week scan.
At seven months Elsie had her first operation to repair the cleft in her lip. Four months later, she had surgery to repair her palate, using skin from inside her cheeks to help form the roof of her mouth. A month before her second birthday, she had a third operation to reconstruct her top lip.
Elsie and her family were asked to join the Cleft Collective Study when they attended their regional cleft centre for Elsie’s five-year review appointment just after her fifth birthday.
Robyn, Elsie’s mother, said: “Elsie and I are grateful to the NHS and the wonderful team of doctors, nurses, speech and language therapists, dentists and psychologists, who have helped Elsie so much and who continue to do so. Donating saliva for research, will not change my daughter’s journey, but it may help her get answers to why she was born with a cleft.
“I hope as many families as possible come forward to take part in the study, to see if something can be learned. It’s great that funding has been granted to try and find answers, and I feel as a parent, helping with research is a way of giving something back to the cleft community, and to say thank you too.”
Dr Yvonne Wren, Chief Investigator of The Cleft Collective Cohort Study and Associate Professor in Speech and Communication in the Bristol Dental School, added: “Thanks to funding from the Underwood Trust, our important cleft research will continue. We are grateful to all our participants, who are the heart of the study, and the NHS teams who help us with the study as well as the Scar Free Foundation who funded the important start of the study and first ten years.
“Parents of children born with cleft lip and/or palate want to know why their child has a cleft, which interventions will have the most impact and how it will affect them in later life. The Cleft Collective data will be used to help provide answers to their questions.”