New databank for cleft lip will be world's largest

30 March 2012

A new UK initiative will collate the largest DNA database of samples from children born with cleft lip and palate in an attempt to determine the underlying causes of these relatively common birth defects.
 
Cleft lip and palate affect around 1,200 babies born in the UK each year, and one in every 500-700 globally. Besides their disfiguring effect, without surgical correction they also cause problems with feeding and speech and may lead to significant problems with the ears and teeth.
 
These congenital abnormalities arise early in embryonic development, and are believed to be the result of a combination of genetic and environmental factors that remain poorly understood.
 
Now, researchers in the Cleft Collective programme are hoping to recruit 3,000 babies to analyse not only potential causes, but also the outcomes of treatments available in the UK and family experiences of supporting children born with the conditions.
 
Comment: Even in the UK, where corrective surgery and supportive health services are available to children born with cleft lip or palate are widely available, these birth defects are a significant burden. In countries with fewer healthcare resources, their impact can have a devastating effect on the health and future wellbeing of affected children and their families.

The PHG Foundation’s newly updated free Toolkit for Congenital Disorders, part of the Born Healthy programme, includes extensive information on orofacial clefts intended to help experts in such countries assess health needs and plan solutions (see previous news).