CLEFT - Bridging the gap

Research projects

 

CLEFT funds research into the unanswered questions regarding cleft lips and palates: Why do they occur? How can we best treat them? Could they ever be prevented? 75% of CLEFT's funds are spent on research with the remaining 25% funding our work overseas. We aim to push the boundaries of conventional treatment by funding research into improving operating techniques and by looking at the underlying reasons for cleft deformities. We also support cleft lip and palate teams in the developing world by working with them to improve surgery and facilities.

 

Trying to improve the quality of the surgery by understanding what the muscles of the soft palate do: The first ever study of the muscles of the soft palate

Research in the UK has shown that across the country about 25% of children having repair of cleft palate require further surgery because the palate is not long enough and/or mobile enough to close off the palate against the back of the throat. This means that air escapes during speech and children often develop abnormal speech patterns as they try to compensate. The North Thames Cleft team has pioneered the use of the operating microscope for cleft palate repair and has improved on these results but there is still progress to be made. There are many gaps in our knowledge of the anatomy and function of the soft palate muscles. This project will involve the appointment of a research worker to study the palate muscles using techniques including MRI scanning of the palate muscles in cleft and non-cleft individuals, anatomical dissections, microscopic examination of the muscles, electrical studies of muscles, and assessment of timing of the closure of the palate, as well as gathering data from our large database.

This is a 3 year project, which has the potential to improve the quality of results following palate repair in our own centre and with the resulting information also being passed on to centres throughout the world.

Understanding where clefts come from and which genes are responsible: Does the TBX22 transcription factor play an important role?

An important part of the work of a cleft team is to give genetic advice to families planning a second pregnancy, or for an affected child's future pregnancies. A genetic risk factor (TBX22) causes cleft palate in around 5% of affected babies. We have recently studied this gene in mice and found that the majority suffered from the particular defect called submucous cleft palate. Human patients with this type of cleft have not been previously extensively studied. This project involves collecting DNA samples from patients with cleft palates. We want to find out if mutations in the TBX22 gene are responsible for submucous cleft palate. This will help in further research into the molecular basis and prevention of clefts.

Understanding the effectiveness of baby plates: A longitudinal study of the speech and growth outcomes at 5 years of age of children with unilateral cleft lip and palate treated with and without baby plates in infancy.

Some cleft teams use dental plates in the neonatal period before repair of cleft palate. They are controversial, with very strong individual beliefs both for and against their use. Those in favour claim that they narrow the cleft, thereby making the surgical repair easier and that they result in superior speech outcome and growth of the facial bones. It has also been claimed that they help feeding. There is, however, very little evidence to support the use of this expensive and family-intensive intervention. Our team has undertaken a major randomised controlled trial to study the benefits. So far we have found that there have been no benefits for feeding. We now wish to evaluate the speech and facial growth outcomes for the 5 year old patients in this group, following their routine 5 year data collection. This study has the potential to influence practice worldwide.

The Sri Lankan Cleft Lip and Palate Project - translation and transcription of psychological questionnaires

Several members of the North Thames Cleft Team have been very closely involved with Sri Lanka for over 25 years. Recently some members of the team have been back to Sri Lanka to look at the long-term outcomes of children who have been operated on over the years, and as part of this they have undertaken psychology questionnaires which are similar to those which are given to patients in the UK. These need to be translated and transcribed and will then be very valuable in comparing the psychological effects of cleft lip and palate in Sri Lanka and the UK.

Speech Project

CLEFT has provided £7,500 to evaluate the outcomes of over 200 operations on palates which did not have classical clefts or submucous clefts. The aim is to try to understand which patients will benefit from further surgery.

Medical explanation: Nasal speech results from a problem with the palate, in which it fails to close off against the back wall of the throat and allows air to escape. It may be associated with an unsuccessful palate repair, but not all patients who have nasal speech have had cleft palates.

The North Thames Cleft Team has been pioneers in defining other types of palate abnormality and in surgically correcting them. However, not all of these operations are successful.

3-D Imaging project

CLEFT has provided £7,500 towards a pilot project with Professor Malcolm Birch (Director of Clinical Physics at The Royal London Hospital) to develop techniques for 3-D MRI scanning of the palate.

Medical explanation: Current investigations of palate function involve either X-rays or endoscopy (looking with a telescope at how the palate is functioning). Neither of these investigations gives a three-dimensional view and neither allows the muscles of the palate to be identified.

MRI techniques have improved over recent years and offer the potential for a much better understanding of the function of the palate and its individual muscles. It is hoped that the three-dimensional anatomical information which MRI can offer will enable more comprehensive pre- and post-operative assessments of cleft patients and improve our understanding of how the palate functions.