The world’s largest ever cleft lip and palate research programme has been launched at London’s Science Media Centre.
A new five-year research programme, which will involve the largest gene bank of its kind being established at the University of Bristol, aims to collect DNA from all cleft children born in the UK from this autumn. The programme will then follow their development to adulthood.
The programme, named The Cleft Collective, will be jointly hosted by the University of Bristol and the University of Manchester and has received £5 million of funding from the Healing Foundation to cover its anticipated £11 million costs, the remainder of which will be covered by the universities and NHS partners.
The University of the West of England and Central Manchester Universities NHS Trust will also participate in the study which is expected to involve up to 5,000 children. Cleft affects 1,200 children born in Britain each year and opinion is divided on many aspects of both its cause and treatment.
Professor Jonathan Sandy said: “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.”
Professor Jill Clayton-Smith, consultant clinical geneticist at the North Western Regional Genetic Service, Manchester, said: “The causes of cleft lip and cleft palate remain poorly understood.
“It is a very complex process which has a number of genetic factors and a number of environmental factors such as diet. This study will provide us with the possibility of looking for the first time at how genetic and environmental factors work together.”
Sue Carroll, of the Cleft Lip and Palate Association (Clapa), 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,” she said.
Visit the website at www.cleftcollective.org.uk if you wish to participate in the programme.