Identifying people living with cystic fibrosis in the Danish National Patient Registry: A validation study

Hans Kristian Råket*, Joanna Nan Wang, Janne Petersen, Tacjana Pressler, Hanne Vebert Olesen, Søren Jensen-Fangel, Thomas Bryrup, Espen Jimenez-Solem, Camilla Bjørn Jensen

*Corresponding author for this work

Research output: Contribution to journal/Conference contribution in journal/Contribution to newspaperJournal articleResearchpeer-review

Abstract

Background: The Danish National Patient Registry (DNPR) serves as a valuable resource for scientific research. However, to ensure accurate results in cystic fibrosis (CF) studies that rely on DNPR data, a robust case-identification algorithm is essential. This study aimed to develop and validate algorithms for the reliable identification of CF patients in the DNPR. Methods: Using the Danish Cystic Fibrosis Registry (DCFR) as a reference, accuracy measures including sensitivity and positive predictive value (PPV) for case-finding algorithms deployed in the DNPR were calculated. Algorithms were based on minimum number of hospital contacts with CF as the main diagnosis and minimum number of days between first and last contact. Results: An algorithm requiring a minimum of one hospital contact with CF as the main diagnosis yielded a sensitivity of 96.1 % (95 % CI: 94.2 %; 97.4 %) and a PPV of 84.9 % (82.0 %; 87.4 %). The highest-performing algorithm required minimum 2 hospital visits and a minimum of 182 days between the first and the last contact and yielded a sensitivity of 95.9 % (95 % CI: 94.1 %; 97.2 %), PPV of 91.0 % (95 % CI: 88.6 %; 93.0 %) and a cohort entry delay of 3.2 months at the 75th percentile (95th percentile: 38.7 months). Conclusions: The DNPR captures individuals with CF with high sensitivity and is a valuable resource for CF-research. PPV was improved at a minimal cost of sensitivity by increasing requirements of minimum number of hospital contacts and days between first and last contact. Cohort entry delay increased with number of required hospital contacts.

Original languageEnglish
JournalJournal of Cystic Fibrosis
Volume23
Issue6
Pages (from-to)1095-1099
Number of pages5
ISSN1569-1993
DOIs
Publication statusPublished - Nov 2024

Keywords

  • Cystic fibrosis
  • Databases
  • Factual
  • Registries
  • Validation studies

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