@article{d63d0b8d-e0ee-4342-8ca5-a77c272090f2,
  abstract     = {{<p>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.</p>}},
  author       = {{Larsson, Sofia and Svensson, Henry and Stiernman, Mia and Wiedel, Anna Paulina and Becker, Magnus}},
  issn         = {{2000-656X}},
  keywords     = {{cleft lip and palate; long-term follow-up; national quality registry; secondary alveolar bone grafting}},
  language     = {{eng}},
  pages        = {{161--168}},
  publisher    = {{Medical Journals Sweden AB}},
  series       = {{Journal of Plastic Surgery and Hand Surgery}},
  title        = {{The Swedish National Cleft Registry as a tool for long-term outcome evaluation : secondary alveolar bone grafting as an example}},
  url          = {{http://dx.doi.org/10.2340/jphs.v61.46192}},
  doi          = {{10.2340/jphs.v61.46192}},
  volume       = {{61}},
  year         = {{2026}},
}