The Cleft Collective Cohort Studies - v1
Research type
Research Study
Full title
The Cleft Collective Cohort Studies - a large DNA backed prospective resource for the study of the genetic and environmental determinants of cleft lip and/or palate and the long term outcomes in children with cleft lip and/or palate
IRAS ID
108857
Contact name
Yvonne Wren
Contact email
Sponsor organisation
University of Bristol
Duration of Study in the UK
4 years, 11 months, 30 days
Research summary
Cleft lip and/or palate is one of the commonest congenital conditions in the United Kingdom (UK) with an estimated prevalence of 1 in 700 live births. The evidence to support preventive interventions and effective treatments is limited. Being born with a cleft is now recognised as a major cause of ill health. There is also new evidence emerging which suggests these children need increased educational support and are more likely to have a shorter lifespan, with increased risk for all major causes of death, when compared with those children born without clefts. 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. Our aim is to create the infrastructure, capacity and resources necessary to gain important new
knowledge that will advance our understanding of the causes of cleft lip and/or palate, inform treatment and ultimately improve the lives of children, adolescents and adults with the condition. The aim is to create a birth cohort study (recruit babies and their families born with a cleft) and a five year cohort study (recruiting five years olds and their families born with a cleft).REC name
South West - Central Bristol Research Ethics Committee
REC reference
13/SW/0064
Date of REC Opinion
10 May 2013
REC opinion
Further Information Favourable Opinion