Validity and Reliability of Speech Data in the Norwegian Registry of Cleft Lip and Palate

What is already known on this subject Quality registries for cleft patients have been established in several countries and are recognized as valuable tools for systematic data collection. The use of standardized protocols and national benchmarks for speech outcomes enhances the meaningfulness of reporting and facilitates comparisons across treatment centres. Previous studies on the validity and reliability of speech data indicate variability across different parameters, underscoring the importance of careful interpretation of registry data to ensure optimal patient care. These findings highlight the need for ongoing efforts to improve consistency in assessment procedures and to strengthen the quality of data used in clinical decision-making and research. What this paper adds to existing knowledge The Norwegian Registry of Cleft Lip and Palate has systematically collected data since 2011, maintaining a high inclusion rate. Speech data are gathered in accordance with a national protocol and assessed by an individual speech-language therapist (SLT). To ensure the validity and reliability of these data, achieving consistent inter- and intra-rater agreement among SLTs nationwide is essential. This study investigates the validity of speech data obtained from routine assessments recorded in the Norwegian Registry of Cleft Lip and Palate. The study also proposes and evaluates speech-related quality indicators for use in the Norwegian Registry of Cleft Lip and Palate. The study adds a significant contribution to research on quality registries and the development of national standards for speech outcomes in cleft care. What are the potential or actual clinical implications of this work? The speech data in the Norwegian Registry of Cleft Lip and Palate can be considered valid, as the degree of coverage and reporting is high, and the variables are assessed for reliability. The reliability of the speech data is generally strong, both between registry data and blinded assessments, and in terms of inter- and intra-rater agreement among assessors. However, findings related to articulation variables underscore the need for systematic calibration among SLTs within the cleft teams. Three proposed speech-related quality indicators have shown high reliability and can be implemented as clear, accessible and meaningful measures within the Norwegian Registry of Cleft Lip and Palate.