Our research vision

Our approach

CLEFT’s mission is to bridge the gap in cleft care and knowledge. Our research is already improving the treatment and outcomes for children born with a cleft, so that they can lead happy and fulfilling lives. We do this by drawing on some of the world’s best clinicians in cleft care, in collaboration with cleft centres around the UK.

Our research strategy focuses on three key areas:

1. To better understand the likely causes of clefts;

2. To find new and kinder treatments and surgery to repair the cleft;

3. To improve the speech of children who have had cleft palate repairs.

1. Better understanding the likely causes of clefts

We are ever closer to identifying the genes responsible for congenital abnormalities. One piece of the jigsaw fell into place after CLEFT funded researchers carried out a five-year study on a rare disorder of palate development in a family in Egypt. They realised that the family history could be highly significant and undertook a project to examine the family’s genes. They have since been able to identify the cause as a variant in a gene called FOXF2.

2. Finding new and kinder treatments and surgery to repair the cleft

Our research into the significance of muscle abnormalities in the cleft soft palate has led to advances in the techniques used to repair them. These techniques have been found to improve speech considerably – potentially better than in any other settings worldwide.

We also funded a study to understand the long-term outcomes in patients treated by a single surgeon. This showed that new surgical protocols for a baby’s first operation could reduce the need for further intrusive surgical interventions as the child grows. The results are also quicker, with a marked improvement in speech, so that the child requires less long-term therapy. Overall, the study showed that this is a kinder and more efficient approach, now increasingly used around the world.

3. Improving the speech of children who have had cleft palate repairs

We want children to be able to live a normal life and not be impaired by a cleft palate. Speech and language abnormalities are among the most challenging problems faced by patients who have had cleft palate repair. About two thirds of children born with a cleft palate require speech therapy in combination with surgery. Even in the UK, therapy provision in the community is inconsistent and it can be very difficult to get enough or appropriate ‘cleft specific’ therapy.

CLEFT is supporting a new method of speech therapy, called Parent Led Articulation Therapy (PLAT). We are part-funding a randomised controlled trial with Great Ormond Street Hospital, London and Temple Street Hospital, Dublin, to find out whether it is possible to train parents to work on their child’s speech difficulties, supported by a team of therapists and technology. The potential of this project could transform the way speech therapy is provided, as well as having significant implications for overseas countries where little or no speech therapy support is available.

We can and must do more

A cleft lip and/or palate continues to be the most common birth defect. Children’s physical and emotional well-being continues to be at risk and the cost to the NHS for a child’s lifetime care is considerable.

Despite our successes, there is still much uncertainty about the best techniques for surgical treatment of clefts and the results are far from perfect. There are also limited research funds available from the NHS and the pharmaceutical industry. Cleft research has not been a priority because it is not seen as life threatening. It is, however, critical to quality of life, so charitable support has been and remains crucial to progressing research to help cleft patients.

By funding research, we are seeking to provide answers to currently unanswered questions, such as:

Can we identify which genes have a role in clefts?
Why do so many cleft palate operations fail to produce a fully functional palate?
Does the technique of repair of the muscles reduce hearing loss in children with clefts?
Why do so many cleft palate operations fail to produce normal speech?
What are the dental anomalies in different types of clefts and how can they best be treated?

Further insights and better understanding will be critical if surgeons, speech therapists and other medical professionals are to provide improved, long-term treatment and care for all people born with clefts.

We are now reaching out to our supporters and beyond to fund further research to change these children’s lives – now and long into the future.

Click here to find out more about some of the research CLEFT has funded.

Be part of our research community by donating now

Latest

Bristol Speech and Language Therapy Research Unit (BSLTRU) Half Marathon Fundraiser

We are Hannah, Lucy, Sam and Jen. We are Speech and Language Therapists (SLTs) and researchers linked with the Bristol Speech and Language Therapy Research Unit (BSLTRU). We are passionate about supporting children and young people with speech, language and communication disorders, including cleft lip/palate. This year we are pulling out all the stops to get race-fit and take on the Bristol Great Run Half Marathon on 25th September in aid of CLEFT.
A film about CLEFT research

Our research film looks at the importance of research into the likely causes of cleft lip and palate and at the sort of research projects that CLEFT supports.
CLEFT's International work

A new film by Paul Whiitaker shows some of the projects that CLEFT has been able to support so far and what our philosophy is with regards to supporting international centres, Our core ethos - of providing long-term, sustainable ways of bridging the gap in cleft care - is at the very heart of all we do.
Gillian McCarthy

CLAPA Representative

Reflections on research in speech and language therapy

As part of CLEFT's launch to become a CIO, Debbie Sell recorded 'Reflections on research in speech and language therapy'. This is a wonderful opportunity to hear from one the country's most recognised researchers in speech and language therapy share her thoughts on this fascinating subject.
The value of research to cleft professionals and patients

Chair of the CLEFT Research Steering Group, Rona Slator, is interviewed here by Tracy Morris on the value of research into cleft lip and palate.
[email protected] UPDATE

We are delighted to update you on the launch of the [email protected] website – a unique online cleft therapy and parent training resource for children with cleft articulation difficulties.
VPI Paper in Cleft Palate Craniofacial Journal

The American Cleft Palate Craniofacial Journal reviewed literature on palate re-repair for the treatment of velopharyngeal insufficiency (VPI) and cited the Sommerlad Protocol and Palate Repair technique of VPI as being very beneficial to patients with an 84% success rate.
New paper published in the Cleft Palate-Craniofacial Journal

Research that CLEFT funded shows how a pioneering surgical technique results in a very low rate of secondary speech surgery and very good speech outcomes in children aged 5 years of age, with less need for speech therapy.
[email protected] now launched!

We are delighted that the website [email protected] is now available.
Pioneering use of the operating microscope

Early on in his career as plastic surgeon, CLEFT Chairman Mr Brian Sommerlad realised that operating techniques could be improved upon and in 1993, he started to use a microscope for surgery.
Soft palate muscles research

A project to better understand the way the muscles of the soft palate work to see if improvements can be made to surgical techniques and reduce the need for further operations and speech therapy.
The genetics of cleft lip and palate

Investigations into the genetics of cleft lip and palate to understand more about why cleft lip and palate occurs.
TBX22 Mouse Model

CLEFT has funded research into the investigation of a gene called the TBX22 that regulates important development events during normal palate function, in order to find new treatments.