The Swedish National Cleft Registry as a tool for long-term outcome evaluation: secondary alveolar bone grafting as an example
DOI:
https://doi.org/10.2340/jphs.v61.46192Keywords:
cleft lip and palate, secondary alveolar bone grafting, national quality registry, long-term follow-upAbstract
National quality registries provide valuable opportunities for prospective, standardised follow-up of clinical outcomes over long periods. In cleft care, such long-term data remain limited internationally, particularly beyond childhood. The Swedish National Cleft Lip and Palate (CL/P) Registry, established in 1999 with predefined variables and standardised follow-ups, enables longitudinal evaluation of treatment outcomes across centres.
The primary aim was to demonstrate the long-term usability of the Swedish National CL/P Registry for outcome assessment. As a clinical example, long-term outcomes after secondary alveolar bone grafting (SABG) from a single centre with complete historical registry coverage were analysed. National analyses of SABG outcomes are currently constrained as the first complete nationwide cohorts became available in 2025. To enable a longer observation period, data from a centre with consistent documentation since the registry’s initiation were therefore examined.
Since April 2006, 167 patients had documented SABG outcomes at a standardised 16-year follow-up. Outcomes were assessed using a nationally agreed bone height scoring system based on two-dimensional dental radiographs, where a bone height of ≥ 3/4 of the root length was considered successful. Successful grafting was observed in 84% of unilateral and 71% of bilateral clefts. Higher age at first SABG and the need for complementary grafting were associated with poorer outcomes.
This study illustrates how a national quality registry with predefined variables and long-term follow-up can identify clinically relevant patterns and challenges. The presented SABG outcomes exemplify registry-based quality evaluation and provide a structured basis for continuous discussion, adjustment and improvement of cleft care.
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Copyright (c) 2026 Sofia Larsson, Henry Svensson, Mia Stiernman, Anna-Paulina Wiedel, Magnus Becker
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