Healthcare burden of rare diseases in Hong Kong - adopting ORPHAcodes in ICD-10 based healthcare administrative datasets

Orphanet Journal of Rare Diseases
Annie Ting Gee ChiuBrian Hon Yin Chung

Abstract

The burden of rare diseases is important for healthcare planning but difficult to estimate. This has been facilitated by the development of ORPHAcodes, a comprehensive classification and coding system for rare diseases developed by the international consortium Orphanet, with cross-references to the 10th version of the International Classification of Diseases and Related Health Problems (ICD-10). A recent study in Western Australia made use of this cross-referencing to identify rare diseases-related admissions in health administrative datasets. Such methodology was adopted in Hong Kong, which has a population of 7 million comprising of 92% ethnic Chinese, with over 80% of admissions taking place in the public hospitals and available for review from the local public healthcare database. Our objective was to identify the inpatient healthcare burden of rare diseases in Hong Kong. We extracted admission records of all patients coded with one or more of the 1084 ICD-10 codes cross referenced with 467 ORPHAcodes during the study period from 1st January 2005 to 31st December 2016. We further analysed rare disease-related inpatient healthcare cost using a subset of patients admitted during 1st April 2015 - 31st March 2016. A total numbe...Continue Reading

References

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Citations

Mar 19, 2019·American Journal of Medical Genetics. Part a·Carlos R Ferreira
Sep 19, 2019·European Journal of Human Genetics : EJHG·Stéphanie Nguengang WakapAna Rath
May 16, 2019·Current Opinion in Pediatrics·Saquib A Lakhani, Richard Pierce
Aug 23, 2020·International Journal of Environmental Research and Public Health·Shiwei GongDong Dong
Dec 3, 2020·European Journal of Human Genetics : EJHG·Ana RathYann Le Cam
Apr 2, 2021·European Journal of Neurology : the Official Journal of the European Federation of Neurological Societies·Annie Ting Gee ChiuSophelia Hoi Shan Chan
Jun 30, 2021·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Angela A Navarrete-OpazoSheldon R Garrison
Aug 14, 2021·Orphanet Journal of Rare Diseases·Claudia Ching Yan ChungBrian Hon Yin Chung
Sep 14, 2021·Protein Science : a Publication of the Protein Society·Tucker L Apgar, Charles R Sanders

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Software Mentioned

Orphanet
ORPHAcodes
CDARS
Excel
Clinical Data Analysis and Reporting System ( CDARS )

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