The CLP register is a national quality registry for follow-up of children and adolescents born with some type of cleft lip and palate (CLP). CLP is the most common facial malformation and the incidence is 1,8 of 1000 new-borns. Scandinavia has had a leading role in the development of treatment of these children, thanks to early teamwork and an early centralization of treatment. In Sweden, treatment and follow-up are carried out at one of Sweden’s six centers for CLP. The treatment differs somewhat between the different centers.
The CLP registry was started in 1999 as a joint venture between Sweden’s six CLP centers. The background was that the treatment differed between the different centers, and we wanted to enable comparison of treatment results to be able to improve the care of children. In 2016, the Swedish Social Board and the Swedish Association of Local Authorities certified the CLP register as a National Quality Register. In 2018, the CLP registry was upgraded to certification level 2.
The aims of the CLP register are:
- To longitudinally evaluate the results of treatment methods in terms of appearance, teeth/occlusion and speech.
- To ensure consistent treatment for children and adolescents born with CLP
- To increase the cooperation between the Swedish CLP centers
- To improve the treatment methods for CLP
All children in Sweden born with CLP are offered participation in the register. The children are followed from infancy to adulthood. Background data such as cleft type, heredity and additional syndromes and/or malformations are registered at birth. Data on surgical treatment is recorded continuously. Treatment results regarding appearance, teeth/occlusion and speech are registered at 5, 10, 16 and 19 years of age. The continuous and standardized monitoring means that we can quickly see if any deterioration occurs in the treatment results. This creates the conditions for early put into action to improve the treatment. The comparison of treatment between the centers allows exchange between the centers, in order to improve care and to offer all children an equal treatment.
For children born before 2009, the registration of data at different centers has been uneven. For children born from 2009 onwards, continuous recording is done.