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Validation of Danish registry-cases of type 1 diabetes in women giving live birth using a clinical cohort as gold standard

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  • Tina Wullum Gundersen, University of Copenhagen
  • ,
  • Andreas Ebbehoj
  • Sine Knorr
  • Dorte Møller Jensen, Steno Diabetes Centre Odense, University of Southern Denmark
  • ,
  • Peter Damm, University of Copenhagen
  • ,
  • Ellen Christine Leth Løkkegaard, University of Copenhagen
  • ,
  • Elisabeth R Mathiesen, University of Copenhagen
  • ,
  • Reimar W Thomsen
  • Tine Dalsgaard Clausen, University of Copenhagen

INTRODUCTION: The aim of this study was to validate type 1 diabetes in women giving live birth in the Danish national registries against a clinical cohort of confirmed cases (the Danish Diabetes Birth Registry [DDBR] cohort).

METHODS: National registries including diagnosis codes, redeemed prescriptions and background data were combined. Three main algorithms were constructed to define type 1 diabetes in women giving live birth: (1) Any diabetes diagnosis registered before delivery and before age of 30, (2) a specific type 1 diabetes diagnosis registered before delivery regardless of maternal age and (3) a 'preexisting type 1 diabetes in pregnancy' diagnosis registered before delivery. In additional sub-algorithms, we added information on anti-diabetic medicine and gestational diabetes diagnosis. We calculated positive predictive value (PPV) and completeness using the DDBR cohort as gold standard. Since DDBR included between 75 and 93% of women with confirmed type 1 diabetes giving live birth, we used quantitative bias analysis to assess the potential impact of missing data on PPV and completeness.

RESULTS: Main algorithm 2 had the highest PPV (77.4%) and shared the highest completeness (92.4%) with main algorithm 1. Information on anti-diabetic medicine and gestational diabetes increased PPV, on expense of completeness. All algorithms varied with PPV between 65.7 and 87.6% and completeness between 73.6 and 92.4%. The quantitative bias analysis indicated that PPV was underestimated, and completeness overestimated for all algorithms. For algorithm 2, corrected PPV was between 82.1 and 94.6% and corrected completeness between 84.7 and 91.2%.

CONCLUSIONS: The Danish national registries can identify type 1 diabetes in women giving live birth with a reasonably high accuracy. The registries are a valuable source for future comparative outcome studies and may also be suitable for monitoring prevalence and incidence of type 1 diabetes in women giving live birth.

Original languageEnglish
Article numbere374
JournalEndocrinology, Diabetes & Metabolism
Number of pages8
Publication statusPublished - Jan 2023

    Research areas

  • Type 1 diabetes mellitus, Pregnancy, Validation study

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