A thematic study : impact of COVID-19 pandemic on rare disease organisations and patients across ten jurisdictions in the Asia Pacific region

A thematic study : impact of COVID-19 pandemic on rare disease organisations and patients across ten jurisdictions in the Asia Pacific region

This study assesses the areas and extent of impact of the Coronavirus Disease of 2019 (COVID-19) pandemic on rare disease (RD) organisations in the Asia Pacific region. There is no existing literature that focuses on such impact on RD organisations in any jurisdictions, nor RD populations across mul...

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Main Authors: Chung, Claudia Ching Yan, Ng, Yvette Nga Chung, Jain, Ritu, Chung, Brian Hon Yin
Other Authors: School of Humanities
Format: Article
Language:English
Published: 2021
Subjects:
Humanities::General
COVID-19
Rare Disease
Online Access:https://hdl.handle.net/10356/152929
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Institution: Nanyang Technological University
Language: English
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spelling sg-ntu-dr.10356-1529292023-03-11T20:05:44Z A thematic study : impact of COVID-19 pandemic on rare disease organisations and patients across ten jurisdictions in the Asia Pacific region Chung, Claudia Ching Yan Ng, Yvette Nga Chung Jain, Ritu Chung, Brian Hon Yin School of Humanities Humanities::General COVID-19 Rare Disease This study assesses the areas and extent of impact of the Coronavirus Disease of 2019 (COVID-19) pandemic on rare disease (RD) organisations in the Asia Pacific region. There is no existing literature that focuses on such impact on RD organisations in any jurisdictions, nor RD populations across multiple jurisdictions in the Asia Pacific region. A cross-sectional survey was distributed to RD organisations between April and May 2020. Quantitative and qualitative data on the impact of COVID-19 on RD organisations and patients were collected from the organisation representative's perspective. Qualitative data was analysed using thematic analysis. A follow-up focus group meeting was conducted in August 2020 to validate the survey findings and to discuss specific needs, support and recommendations for sustainable healthcare systems during the pandemic. Published version 2021-10-21T06:19:11Z 2021-10-21T06:19:11Z 2021 Journal Article Chung, C. C. Y., Ng, Y. N. C., Jain, R. & Chung, B. H. Y. (2021). A thematic study : impact of COVID-19 pandemic on rare disease organisations and patients across ten jurisdictions in the Asia Pacific region. Orphanet Journal of Rare Diseases, 16, 119-. https://dx.doi.org/10.1186/s13023-021-01766-9 1750-1172 https://hdl.handle.net/10356/152929 10.1186/s13023-021-01766-9 33673852 2-s2.0-85102209226 16 119 en Orphanet Journal of Rare Diseases © The Author(s) 2021. Open Access. This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativeco mmons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. application/pdf
institution Nanyang Technological University
building NTU Library
continent Asia
country Singapore
Singapore
content_provider NTU Library
collection DR-NTU
language English
topic Humanities::General
COVID-19
Rare Disease
spellingShingle Humanities::General
COVID-19
Rare Disease
Chung, Claudia Ching Yan
Ng, Yvette Nga Chung
Jain, Ritu
Chung, Brian Hon Yin
A thematic study : impact of COVID-19 pandemic on rare disease organisations and patients across ten jurisdictions in the Asia Pacific region
description This study assesses the areas and extent of impact of the Coronavirus Disease of 2019 (COVID-19) pandemic on rare disease (RD) organisations in the Asia Pacific region. There is no existing literature that focuses on such impact on RD organisations in any jurisdictions, nor RD populations across multiple jurisdictions in the Asia Pacific region. A cross-sectional survey was distributed to RD organisations between April and May 2020. Quantitative and qualitative data on the impact of COVID-19 on RD organisations and patients were collected from the organisation representative's perspective. Qualitative data was analysed using thematic analysis. A follow-up focus group meeting was conducted in August 2020 to validate the survey findings and to discuss specific needs, support and recommendations for sustainable healthcare systems during the pandemic.
author2 School of Humanities
author_facet School of Humanities
Chung, Claudia Ching Yan
Ng, Yvette Nga Chung
Jain, Ritu
Chung, Brian Hon Yin
format Article
author Chung, Claudia Ching Yan
Ng, Yvette Nga Chung
Jain, Ritu
Chung, Brian Hon Yin
author_sort Chung, Claudia Ching Yan
title A thematic study : impact of COVID-19 pandemic on rare disease organisations and patients across ten jurisdictions in the Asia Pacific region
title_short A thematic study : impact of COVID-19 pandemic on rare disease organisations and patients across ten jurisdictions in the Asia Pacific region
title_full A thematic study : impact of COVID-19 pandemic on rare disease organisations and patients across ten jurisdictions in the Asia Pacific region
title_fullStr A thematic study : impact of COVID-19 pandemic on rare disease organisations and patients across ten jurisdictions in the Asia Pacific region
title_full_unstemmed A thematic study : impact of COVID-19 pandemic on rare disease organisations and patients across ten jurisdictions in the Asia Pacific region
title_sort thematic study : impact of covid-19 pandemic on rare disease organisations and patients across ten jurisdictions in the asia pacific region
publishDate 2021
url https://hdl.handle.net/10356/152929
_version_ 1761781217741504512

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