Laterality in cleft lip and palate: establishing an international interdisciplinary consortium to investigate causes, treatments and outcomes

Every 2-3 minutes, a baby is born with a cleft lip with or without a cleft palate somewhere in the world. Over half of these occur on the left side of the face while almost one third are on the right and the remainder occur on both sides (bilateral cleft lip). Clinical practice with this patient community has led to hypotheses regarding both the causes of these subtypes as defined by where the cleft occurs, and also their response to treatment. Investigating the causes of cleft and also the best treatments for them is challenged by the relatively small number of babies that are born with the condition each year. This means that there are too few in the population to carry out robust research in one country unless the research takes place over many years. However, clinical care for children born with cleft is already time consuming given the five-year period between primary surgery in infancy and preliminary outcomes for speech and growth, measured when the child is aged 5. An alternative is to consider how we can combine datasets from different countries. Several nations already have processes for collecting and collating regional data on interventions provided to children born with cleft lip and palate and outcome data at age 5. This networking grant will help establish processes for combining data from international sources to address questions which can provide information to families and to clinical teams regarding causes and best practice for children with right- versus left-sided clefts.