World's biggest ever cleft lip and palate research programme

1st April 2013

Parents of children born with a cleft lip and/or palate are being invited to enrol in the world’s largest ever cleft research programme, which will be launched in London. The research will be led by the University of Bristol in partnership with UWE Bristol.

Cleft is one of the most common congenital abnormalities in the world, affecting 1,200 children born in the UK every year - but little is known about its causes, with opinion divided on best treatments.

The five-year UK research programme, costing £11 million and called The Cleft Collective, is the biggest single investment in cleft research anywhere in the world. The Healing Foundation charity will be providing £5 million towards the project, with additional funding coming from university and NHS partners.

The Universities of Bristol and Manchester will lead the programme, in partnership with UWE Bristol, Central Manchester University Hospitals NHS Foundation Trust and the NIHR Medicines for Children Research Network Clinical Trials Unit at the University of Liverpool.

The project will involve the largest DNA gene bank of its kind being set up at the University of Bristol. The aim is to collect DNA from all cleft children born in the UK from autumn 2012, and the programme will follow their development through to adulthood.

Professor Jonathan Sandy, lead researcher for the Bristol gene bank and Head of the University of Bristol's School of Oral and Dental Sciences, said: "Children born with cleft often face unique challenges. 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."

UWE Bristol researchers at the Centre for Appearance Research (CAR) will examine the psychological impact on parents of children with cleft palate at diagnosis and analysis of ongoing support needs.

Professor Nichola Rumsey, Co-Director of CAR at UWE Bristol, 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. When parents have a baby with a cleft, typically one of their first questions is ‘Why has this happened to us?’ They also want to know whether their baby will be OK as they grow up.

"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. By following families as the child develops, we will gain a much better understanding of the psychological effects of cleft. This will also help us to develop a clearer picture of the psychological support needs of parents and children.

"Our links with the University of Bristol create a strong multi-disciplinary team, which we hope will benefit parents and children affected by this condition."

The University of Manchester will also host a National Clinical Trials Unit for cleft to co-ordinate NHS based clinical research, improving surgical procedures, therapies and care.

Sue Carroll, Acting CEO of CLAPA (The Cleft Lip and Palate Association), the only UK-wide voluntary organisation specifically helping those with, and affected by, cleft lip and/or palate, added: "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."

Families who want to take part should register their
interest at





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