World's largest cleft lip research project is launched

The largest ever research database and genetic study into cleft lips in the world has been launched in the UK.

It is hoped the five year project – named The Cleft Collective – will enable experts to finally identify the cause of a cleft lip or a cleft palette, something that is currently unknown.

A gene bank is being established at the University of Bristol, which will jointly host the project in conjunction with the University of Manchester.

Parents of children with the condition are now being asked to come forward and join the programme, which will analyse their child’s DNA.

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An estimated 3,000 children will be involved in the research, which will follow them throughout their life to try and identify which treatment options are most suited to cleft lips or palettes.

Researchers are aiming to collect the DNA of all children born with the condition in the UK from autumn 2012 onwards.   

Although the universities of Bristol and Manchester will lead the effort, the University of the West of England (UWE), University of Liverpool and NIHR Medicines for Children Research Network will also be involved.

“Children born with cleft often face unique challenges,” said Professor Jonathan Sandy, the lead researcher from the Bristol-based gene bank.

“These include speech and language issues, educational difficulties and broader health concerns.

"We do not know if these problems are caused by the genes that may be responsible for cleft or by other factors, such as lifestyle or 'environmental' factors.

“This study will help answer these important questions and could also solve the ultimate mystery of what causes cleft in the first place,” he added.

Another part of The Cleft Collective will be to investigate the support – practical and emotional – that the parents of cleft children require.

Sandy continued: “The birth of a cleft is a frightening time for mums.

“The mother is particularly sensitive to a change in the body language of the midwife and knows when something is wrong.

"We are constantly asked three questions. Firstly, what has caused this? Secondly, how will the child get on in life? Thirdly, what is the best treatment?

“This study is trying to answer those questions. This is a huge opportunity and we are fortunate to have found a generous funder,” he said.

This line of research will be taken care of by the Centre for Appearance Research (CAR) at the UWE.

Commenting on its involvement, Professor Nichola Rumsey, the co-director of CAR, said: “CAR is a leader in the study of the psychological impacts of cleft.  

“Our focus will be to gather psychological data from parents on their experience of diagnosis and the early issues of parenting a child with a cleft and their support needs. 

“This is a rare opportunity to follow a cohort of 3,000 babies and their parents during a two to three year period, and hopefully beyond.”

In total, The Cleft Collective is expected to cost £11 million.

So far £5 million worth of funding has been received from the Healing Foundation, with the remainder of the costs expected to be contributed by the universities involved and NHS partners.

The project has been welcomed by The Cleft Lip and Palate Association (CLAPA) and the organisation’s Acting CEO, Sue Carroll, said: “We at CLAPA welcome this new and exciting research programme which, over the next five years, will provide huge insights into cleft lip and/or palate.

“We urge as many people as possible nationwide to get involved.”

Parents are being asked to register their interest in The Cleft Collective at www.cleftcollective.org.uk.  

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