"The European Register of Cleft Lip and Palate Services" will be produced as a result of the concerted action project: "Standards of Care for Cleft Lip and Palate in Europe: EUROCLEFT" funded by the European Commision under its BIOMED II and INCO COPERNICUS programmes. The project, aimed at developing a network of cleft care teams across Europe, ran for three years between 1996 and 1999 and aimed broadly to improve the effectiveness and efficiency of care for European children with clefts of the lip and/or palate. Clefts of the lip and/or palate are birth defects affecting 1:500 live births. Successful rehabilitation requires a complex multidisciplinary mix of services. The work of the project has shown that the organization of cleft care across Europe varies dramatically from highly centralized national teams to poorly coordinated local services. Clinical protocols of care also differ widely and are seldom evidence based. There is no commonly agreed method of quality assurance and resources for research on treatment and prevention are fragmented.
The Register will include: an inventory of services across Europe, with details of approximately 190 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; a set of common Practice Guidelines describing minimum recommendations for care that all European children with clefts should be entitled to; and a set of common recommendations for Documentation governing minimum records that cleft teams should maintain systematic reviews of clinical trials in the literature. This publication will be circulated to all registered centres of the project, governments, health authorities and relevant professional bodies in an effort to raise the profile of cleft lip and palate care in Europe.show more