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 particular through our ongoing relationship with the North Thames Cleft Centre, created by Great Ormond Street Hospital and the St Andrew’s Centre, Broomfield Hospital, Chelmsford.

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.

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