With a population of 500 million in Europe, there are around 10,000 infants born with clefts each year with remarkable ethnic and geographic variation. Individuals with any type of facial cleft require multi-disciplinary care from birth until adulthood and recent studies from Denmark have revealed higher morbidity and mortality throughout life than unaffected persons, with various cancers and psychiatric illnesses being significantly more prevalent. In addition their families usually suffer some degree of psychological effect and are subjected to the lifelong burden of care.
The two major themes that will underpin our future work in the field of orofacial clefts in Europe are treatment (quality of care) and prevention (via (epi)genetics and environmental factors), with multi-disciplinarity cutting edge technology and translational research being important underpinning themes. The EUROCleftNet collaboration aims to adopt a multi-disciplinary approach and to be fully inclusive across the EU, including the Eastern European States in collaboration with the World Health Organisation (WHO) and the European Cleft Organisation (ECO) whose aims include addressing the health inequalities across Europe.
There have been some very successful European collaborations on cleft lip and palate. The haphazard nature of European cleft lip and palate services was addressed under the Framework IV Project *Standards of Care for Cleft Lip and Palate in Europe: Eurocleft*, Contract No. BMH4-CT95-0402, 1996-2000. This work identified 201 clinical teams responsible for the surgical and related care of children with clefts; completed a survey of clinical protocols in use; and defined international guidelines for minimum standards of care and standardised clinical datasets.
Parallel work under the aegis of the European Science Foundation (ESF) Project No. NW.GC/306 (2/6/98) began a dialogue between groups concerned with gene-environment interactions in craniofacial anomalies and led to the development of common core protocols to enhance the compatibility of research in this area. Both of these networks merged into EUROCRAN, a project funded under Framework V, 2000-2004, Contract No.QLG1-CT-2000-01019. This resulted in the Scandcleft Trials, the first international trials randomised trial of techniques for surgically repairing clefts, and a population based gene-environment interaction study of orofacial clefting providing the unique EUROCRAN OFC biobank of 1190 triads. As a result, European including Danish researchers are now seen to have important advantages in conducting leading edge research
- our relatively homogeneous gene pools
- our systematic standardised and longitudinal recording of data on birth defects
- the housing of two of the most respected Birth Defect Registries in the world i.e. EUROCAT and International Clearing House for Birth Defects Surveillance and Research (ICBDSR).
- there are also two WHO Collaborating Centres for Craniofacial Anomalies in Europe (the only two in the world)
- there is close liaison with WHO through the Director of the Department of Reproductive Health and Research (Dr Mario Merialdi) and also the Department for Human Genetics (Dr Victor Boulyjenkov).
A direct consequence of this has been investment in a new clinical trial by NIH, in recognition of the fact that adequate recruitment for such a study would not be achieved in the USA. Denmark’s two cleft teams are taking part in this work and our department at the University of Copenhagen is leading on the development of outcome measurements for early speech development in infants with cleft palate.
However, there is a pressing need for continuing coordination and collaboration in this field as much research energy and effort is being inefficiently or inappropriately used. The synergy of a Network and the increased numbers of subjects with clefts would accelerate both the quality and the speed of research discovery in the field. Each year in Denmark there are XX new births will cleft lip and palate, while the frequency of other craniofacial anomalies is even rarer. In isolation we would be unable to complete meaningful research on the causes and treatment of these conditions. A Network grant would enable us to pool our expertise with other partners to apply for and obtain substantial EU Framework Programme, and other international based funding.