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

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...

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Main Authors: Miroslav ZVOLSKÝ, Šárka DAŇKOVÁ, Marie VIKDAL, Carine ALSOKHN, Robert JAKOB, Milan BLAHA
Format: Article
Language:English
Published: Iuliu Hatieganu University of Medicine and Pharmacy, Cluj-Napoca 2024-11-01
Series:Applied Medical Informatics
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Online Access:https://ami.info.umfcluj.ro/index.php/AMI/article/view/1075
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author Miroslav ZVOLSKÝ
Šárka DAŇKOVÁ
Marie VIKDAL
Carine ALSOKHN
Robert JAKOB
Milan BLAHA
author_facet Miroslav ZVOLSKÝ
Šárka DAŇKOVÁ
Marie VIKDAL
Carine ALSOKHN
Robert JAKOB
Milan BLAHA
author_sort Miroslav ZVOLSKÝ
collection DOAJ
description 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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institution Kabale University
issn 2067-7855
language English
publishDate 2024-11-01
publisher Iuliu Hatieganu University of Medicine and Pharmacy, Cluj-Napoca
record_format Article
series Applied Medical Informatics
spelling doaj-art-944c9286a78e4c65ab49b7ec2a8f8b472025-01-05T21:07:39ZengIuliu Hatieganu University of Medicine and Pharmacy, Cluj-NapocaApplied Medical Informatics2067-78552024-11-0146Suppl. 2Let’s not Miss the Opportunity to Improve Rare Disease Reporting Through ICD-11 ImplementationMiroslav ZVOLSKÝ0Šárka DAŇKOVÁ1Marie VIKDAL2Carine ALSOKHN3Robert JAKOB4Milan BLAHA5Institute of Health Information and Statistics of the Czech Republic, Palackého náměstí, 375/4, 12800, Prague, Czech RepublicInstitute of Health Information and Statistics of the Czech Republic, Palackého náměstí, 375/4, 12800, Prague, Czech RepublicCode Systems Department, Norwegian Directorate of Health, PO Box 220, Skøyen, 0213, Oslo, NorwayData Analytics and Delivery for Impact Division, World Health Organization, Avenue Appia, 20, 1211, Geneva, SwitzerlandData Analytics and Delivery for Impact Division, World Health Organization, Avenue Appia, 20, 1211, Geneva, SwitzerlandInstitute of Health Information and Statistics of the Czech Republic, Palackého náměstí, 375/4, 12800, Prague, Czech Republic 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. https://ami.info.umfcluj.ro/index.php/AMI/article/view/1075Rare diseasesClassificationTerminologyAdministrative data
spellingShingle Miroslav ZVOLSKÝ
Šárka DAŇKOVÁ
Marie VIKDAL
Carine ALSOKHN
Robert JAKOB
Milan BLAHA
Let’s not Miss the Opportunity to Improve Rare Disease Reporting Through ICD-11 Implementation
Applied Medical Informatics
Rare diseases
Classification
Terminology
Administrative data
title Let’s not Miss the Opportunity to Improve Rare Disease Reporting Through ICD-11 Implementation
title_full Let’s not Miss the Opportunity to Improve Rare Disease Reporting Through ICD-11 Implementation
title_fullStr Let’s not Miss the Opportunity to Improve Rare Disease Reporting Through ICD-11 Implementation
title_full_unstemmed Let’s not Miss the Opportunity to Improve Rare Disease Reporting Through ICD-11 Implementation
title_short Let’s not Miss the Opportunity to Improve Rare Disease Reporting Through ICD-11 Implementation
title_sort let s not miss the opportunity to improve rare disease reporting through icd 11 implementation
topic Rare diseases
Classification
Terminology
Administrative data
url https://ami.info.umfcluj.ro/index.php/AMI/article/view/1075
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AT sarkadankova letsnotmisstheopportunitytoimproverarediseasereportingthroughicd11implementation
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AT carinealsokhn letsnotmisstheopportunitytoimproverarediseasereportingthroughicd11implementation
AT robertjakob letsnotmisstheopportunitytoimproverarediseasereportingthroughicd11implementation
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