About the CLP Registry (in English)
The Cleft Lip and Palate (CLP) Registry is a Swedish National Quality Registry that monitors the treatment and long-term outcomes of children and adolescents born with cleft lip, cleft palate, or cleft lip and palate (CLP). CLP is the most common congenital craniofacial anomaly, affecting approximately 1.5 per 1,000 live births in Sweden. Scandinavia has played a leading role in the development of CLP care, largely due to the early adoption of multidisciplinary team-based management and the early centralization of treatment services. In Sweden, treatment and follow-up are provided at one of the country’s six specialized CLP centres, all of which participate in the CLP Registry.
The CLP Registry was established in 1999 as a collaborative initiative between Sweden’s six CLP centres. It was created in response to variations in treatment approaches between centres and to enable comparisons of treatment outcomes, with the aim of improving the quality of care for children with CLP. Since 2016, the registry has been designated a Swedish National Quality Registry by the National Board of Health and Welfare and the Swedish Association of Local Authorities and Regions. In 2023, the CLP Registry was awarded Certification Level 1, the highest certification level for Swedish National Quality Registries.
The aims of the CLP Registry are to
- evaluate treatment outcomes by monitoring facial appearance, dental and occlusal development, and speech;
- ensure equitable, high-quality treatment for all children and adolescents born with CLP throughout Sweden;
- strengthen collaboration between Sweden’s six CLP centres; and
- support the continuous improvement of treatment methods for CLP.
All children and adolescents born in Sweden with CLP from 2009 onwards are offered participation in the CLP Registry. As the final outcome of treatment can only be assessed once craniofacial growth is complete, participants are followed from infancy through to adulthood. Baseline information, including cleft type, family history, and the presence of associated syndromes and/or congenital anomalies, is recorded shortly after birth. Information on surgical treatment is registered continuously. At 18 months of age, data from the assessment of babbling and early speech development are recorded. Treatment outcomes relating to facial growth, dental and occlusal development, and speech are subsequently registered at 5, 10, 16, and 19 years of age.
The registry’s continuous and standardized follow-up makes it possible to identify any deterioration in treatment outcomes at an early stage, allowing timely implementation of measures to improve care. Comparisons of outcomes between the six CLP centres also facilitate the exchange of knowledge and best practices, contributing to ongoing improvements in treatment and ensuring that all children receive equitable, high-quality care.
Senast uppdaterad: 18 augusti 2026
