The Eurocleft project 1996-2000: overview.

INTRODUCTION: The original Eurocleft project, a European intercentre comparison study, revealed dramatic differences in outcome, which were a powerful stimulus for improvement in the services of respective teams. The study developed a preliminary methodology to compare practices and the potential for wider European collaboration including opportunities for the promotion of clinical trials and intercentre comparison was recognized by the European Commission. Therefore, the project: 'Standards of Care for Cleft Lip and Palate in Europe: Eurocleft' ran between 1996 and 2000 and aimed to promote a broad uplift in the quality of care and research in the area of cleft lip and palate.
RESULTS: The results of the 1996-2000 project include: a register of services in Europe, with details of professionals and teams involved in cleft care, service organization, clinical protocols and special facilities for research; a set of common Policy Statements governing clinical practice for European cleft teams, Practice Guidelines describing minimum recommendations for care that all European children with clefts should be entitled to and recommendations for Documentation governing minimum records that cleft teams should maintain; encouraging initial efforts to compare outcomes (results) of care between centres. A survey showed a wide diversity in models of care and national policies as well as clinical practices in Europe. Of the 201 centres that registered with the network, the survey showed 194 different protocols being followed for only unilateral clefts.
CONCLUSION: Cleft services, treatment and research have undoubtedly suffered from haphazard development across Europe. Attainment of even minimum standards of care remains a major challenge in some communities and both the will to reform and a basic strategy to follow are overdue. It is hoped that the Eurocleft Consensus Recommendations reached during the present project will assist in improving the opportunities for tomorrow's patients. It is also hoped that the collaborative research now beginning under the European Commission's Framework V Programme will provide a focus for European researchers wishing to improve understanding, treatment and prevention of clefts of the lip, alveolus and palate in the years ahead.