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04141 Investigation for porphyria in Denmark
  1. Anne Lindegaard Christiansen1,2,
  2. Henrik Lorentzen3,
  3. Palle B Nielsen Fruekilde1,
  4. Jan Frystyk4
  1. 1Clinical Biochemistry, Odense University Hospital, Denmark
  2. 2Department of Blood test, Biochemistry and Immunology, University Hospital of Southern Denmark, Aabenraa, Soenderborg, Denmark
  3. 3Department of Dermatology, Odense University Hospital, Denmark
  4. 4Endocrine Research Unit, Department of Endocrinology, Odense University Hospital, Denmark

Abstract

Introduction The biochemical investigation for porphyria is performed only at one site in Denmark: The Department of Clinical Biochemistry, Odense University Hospital. This descriptive study investigated the number of requested porphyrin analyses from 2020 to 2023. The aim of the study was to elucidate whether Danish citizens are equally tested for porphyria based on geography. The generated knowledge will help us to locate areas, where porphyria may be underreported.

Method Data was collected for citizens having any biochemical porphyrin analysis requested from January 1st 2020 to December 31st 2023. Collected data: ‘The unique civil registration number, living district (commune) and date of sampling’. If a citizen during the period had more than one commune registered, only the first commune was used. Exclusion criteria: ‘Unknown commune, fictive civil registration numbers (e.g. foreign citizens) and citizens from Greenland or Faro islands. From the webside of the Danish Statistics, we collected the average number of citizens living in each commune (2020 to 2023).

Results A total of 1627 unique Danish citizens were included. The number of citizens was normalized to 100.000 inhabitants, and is illustrated on the map. No patients had a porphyrin analysis request in the following communes: Ishoej, Laesoe and Christiansoe (23,201; 1,777 and 90 citizens per commune, respectively).

Discussion/Conclusion There are areas in Denmark, where porphyrin analyses are not requested, and there is not an equal distribution for requested porphyrin analyses.

Some of the areas with low requests seem to resemble areas, where the number of doctors is low, but further studies needs to be performed to investigate this theory.

The map indicates that there are areas in Denmark, where more knowledge of porphyria could be beneficial. Web based educational initiatives should be consider; it is a simple/effective method to reach the remote geographical areas.

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