Method: The centralisation of cleft services in the UK has enabled a nationally co-ordinated approach to research, audit and evidence-based practice. We aim to recruit more than 3,000 families over 3.5 years. Families will either be recruited at the time of diagnosis (antenatal/postnatal), or at the child’s routine 5-year audit clinic. Data collection will include biological samples as well as demographic and psychological questionnaires. Additional data collection includes speech and language and 3D facial imaging. All families will be followed longitudinally. Patient and Public Involvement (PPI) has played a vital role in every stage.
Result: Current funding is provided for five years, and will allow a significant resource for future research in cleft lip/palate to be established. Further grant applications to extend the life of the cohort, as well as the potential for national and international collaboration and knowledge exchange will also be sought.
Conclusion: Within a generation, we hope to know more about the causes of cleft and the impact of the condition and its treatment on those families and individuals affected.