- Registry Manager: Region Skåne
- Registry Centre - affiliation: Registry Centre South
- Start year: 1999
- Classifications used: ICD-10 (International Statistical Classification of Diseases and Related Health Problems - Tenth Revision), The Swedish National Board of Health and Welfare’s Classification of Health Intervention
- This registry contains information on: Diagnoses, Intervention, Orthodontics, Speech, PROM
Description of registry
Cleft lip and palate (CLP) is the most common congenital birth defect of the face. The Swedish National CLP Registry is a quality registry aimed at ensuring equitable treatment for these children.
The CLP registry is also involved in the ICHOM Standard Set for Cleft Lip & Palate, an international project on follow-up systems and quality control for children and teenagers with cleft lip and palate.
All individuals in Sweden with CLP born from 2009 should be recorded. All individuals in Sweden with CLP born 1999 and onwards may be included.
Ages in the register
Baseline data is registered at birth, surgical data continuously, and data on treatment outcome at 18 months and 5, 10, 16 and 19 years of age.
Total volume of registry
3 967 individuals.
For individuals born 2009 to 2018 above 90 %.
References on validations
- Pegelow M, Klintö K, Stålhand G, Lemberger M, Vesterbacka M, Rizell S, Najar Chalien M, Björnström L, Becker M, Marcusson A, Karsten A. Evaluation of the reliability of the 5-year-old and the Modified Huddart and Bodenham indices included in the Swedish Quality Registry for cleft lip and palate. Accepted for publication in European Journal of Orthodontics.
- Malmborn J-O, Becker M, Klintö K. Problems with reliability of speech variables for use in quality registries for cleft lip and palate – experiences from the Swedish cleft lip and palate registry. Cleft Palate-Craniofacial Journal, Epub ahead of print.