November: Collective Slot | News and Features

Elsie before the operation at the age of seven months
The Keen family

Elsie after her third operation before her fifth birthday

Elsie after her third operation before her fifth birthday
The Keen family


Press release published: November 8, 2022

One of the largest cleft lip and palate research programs in the world, The Cleft Collective, celebrates after recently welcoming its 10,000th study participant. Led by the University of Bristol, this UK-wide study of children born with a cleft lip and/or palate (a space in the lip and/or palate) collects data that can be used by researchers here in the UK and across the world to investigate the causes of cleft and the best treatments for it.

One in 700 children is born with a cleft lip or palate or both. In the UK, these children are treated by specialist cleft centers in hospitals with additional support from community services. They may undergo several operations throughout their lives and receive support from specialist nurses, surgeons, psychologists, speech therapists, audiologists, dentists and orthodontists, from birth until at least 20 years, with slot services available throughout adulthood for those in need. .

The study has been running for ten years, funded by The Scarless Foundation, and recruited more than 3,500 children as well as their parents and other family children. Genetic information from saliva and blood samples was collected along with thousands of questionnaires. New funding from The Underwood Trust will allow the study to continue for another five years, allowing more families to participate and children born with a cleft to be followed for longer. This will help the Cleft Collective team understand how their cleft and the treatment they receive makes a difference in their lives, with a particular focus on their speech, appearance and well-being.

The 10,000th participant in the Cleft Collective is five-year-old Elsie. Elsie was diagnosed with bilateral cleft lip and palate during her mother’s 20-week check-up.

At seven months old, Elsie had her first operation to repair her cleft lip. Four months later, she underwent surgery to repair her palate, using the skin from the inside of her cheeks to help form the roof of her mouth. A month before her second birthday, she underwent a third operation to reconstruct her upper lip.

Elsie and her family were invited to join the collective cleft study when they traveled to their regional cleft center for Elsie’s five-year exam appointment just after her fifth birthday.

Robyn, Elsie’s mum, said: “Elsie and I are grateful to the NHS and the wonderful team of doctors, nurses, speech therapists, dentists and psychologists, who have helped Elsie so much and who continue to Donating saliva for research won’t change my daughter’s journey, but it might help her understand why she was born with a cleft.

“I hope that as many families as possible will come forward to take part in the study, to see if anything can be learned. It is great that funding has been given to try to find answers, and I think that ‘As a parent, helping with research is a way to give something back to the split community, and to say thank you too.’

Dr. Yvonne Wrenchief investigator of The Cleft Collective Cohort Study and Associate Professor of Speech and Communication at the Bristol Dental Schooladded: “Thanks to funding from the Underwood Trust, our important cleft research will continue. We are grateful to all of our participants, who are at the heart of the study, and to the NHS teams who help us with the study as well as to the Scar Free Foundation which funded the important start of the study and the first ten years.

“Parents of children born with a 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 later in life. Data from the Cleft Collective will be used to help provide answers to their questions.”

If parents are interested join the study, please send an e-mail [email protected] or contact their local slot team.

More information

Case Study: 10,000th Cleft Collective Participant – Elsie and her mother, Robyn
Elsie was diagnosed with bilateral cleft lip and probable cleft palate at the 20-week checkup. Robyn and Jonathan, Elsie’s parents, have no one on either side of the family with a cleft.

Before Elsie was born, Robyn and Jonathan were invited to a meeting with the cleft team at the nearest regional cleft specialist hospital, where a nurse answered all their questions and showed them photos of children before and after surgery. However, there were still many unknowns, which could only be answered once Elsie was born.

Elsie was born three weeks early due to placental problems. She was taken to the neonatal intensive care unit, where she was examined and a nasogastric tube for feeding was inserted. Elsie was not born at the Regional Cleft Specialist Hospital, but the Cleft Specialist Nurse visited the morning after the birth and counseled Robyn and the maternity staff on feeding and nursing. other challenges of having a baby born with a cleft.

Elsie had her first surgery, a lip adhesion, at seven months old. By this point, Robyn and Jonathan had gotten used to her smile and thought it would take time to adjust to the change in her appearance that would follow the operation. Four months later, she underwent her second surgery to repair her palate. For this surgery, the skin was used on the inside of his cheeks to help form the roof of his mouth. This surgery was vital for Elsie to develop speech. A month before her second birthday, she underwent her third surgery to help rebuild her upper lip. It was this operation that made a significant difference in her appearance.

Elsie is now a first year at school and thriving. She is well known in her local community for always talking and for her smile. As she grows, Elsie will need more surgery and orthodontic appointments, but her family is optimistic about the future and her ability to cope.

About cleft lip and/or palate
Around 1,200 children are born each year with a cleft lip and/or palate in the UK. They undergo up to three operations in the first year of life with, on average, 3.2 admissions and 13.2 days of hospitalization before the age of two. Routine care continues until age 20, and some people need treatment as adults.

About the Underwood Trust
The Underwood Trust was established on July 1, 1973. The name derives from Underwood Lane, Paisley, Scotland, which was the childhood home of one of the founders.

Our goals are to fund a wide range of activities that will have a positive impact on people and the environment. We award a number of grants per year to organizations that share these aspirations and have the capacity to carry out their programs.

About the Scarless Foundation
The Scarless Foundation is a medical research charity, chaired by Professor Sir Bruce Keogh (former National Medical Director of NHS England), whose mission is to achieve a scarless cure within a generation and transform the lives of people affected by conditions disfiguring. Founded in 1999, the Scar Free Foundation has supported over £25 million of research into wound healing, reconstructive surgery, burns and fissures.

About the Fente collective
The Collective cleft cohort studies investigate the biological and environmental causes of cleft, the best treatments for cleft, and the impact of cleft on affected individuals and their families.

Going forward, our research will help answer three key questions families are asking:

  • What caused my child’s cleft?
  • What are the best treatments for my child?
  • Will my child be okay (both now and in the longer term)?

Christine E. Phillips