Let’s not Miss the Opportunity to Improve Rare Disease Reporting Through ICD-11 Implementation

Authors

  • Miroslav ZVOLSKÝ Institute of Health Information and Statistics of the Czech Republic, Palackého náměstí, 375/4, 12800, Prague, Czech Republic
  • Šárka DAŇKOVÁ Institute of Health Information and Statistics of the Czech Republic, Palackého náměstí, 375/4, 12800, Prague, Czech Republic
  • Marie VIKDAL Code Systems Department, Norwegian Directorate of Health, PO Box 220, Skøyen, 0213, Oslo, Norway
  • Carine ALSOKHN Data Analytics and Delivery for Impact Division, World Health Organization, Avenue Appia, 20, 1211, Geneva, Switzerland
  • Robert JAKOB Data Analytics and Delivery for Impact Division, World Health Organization, Avenue Appia, 20, 1211, Geneva, Switzerland
  • Milan BLAHA Institute of Health Information and Statistics of the Czech Republic, Palackého náměstí, 375/4, 12800, Prague, Czech Republic

Keywords:

Rare diseases, Classification, Terminology, Administrative data

Abstract

The identification of rare diseases in health data is crucial for their epidemiological definition. Beyond the existing terminology system ORPHAcodes, we describe the possibilities of the 11th revision of the International Classification of Diseases. We analyzed the linkages of ORPHAcodes to ICD-11 items with only 376 items lacking unique representation in ICD-11. ICD-11 can be used to identify most rare diseases in administrative data.

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Published

21.11.2024

How to Cite

1.
ZVOLSKÝ M, DAŇKOVÁ Šárka, VIKDAL M, ALSOKHN C, JAKOB R, BLAHA M. Let’s not Miss the Opportunity to Improve Rare Disease Reporting Through ICD-11 Implementation. Appl Med Inform [Internet]. 2024 Nov. 21 [cited 2024 Dec. 3];46(Suppl. 2):S17-S20. Available from: https://ami.info.umfcluj.ro/index.php/AMI/article/view/1075