Please use this identifier to cite or link to this item: https://hdl.handle.net/10356/152929
Title: A thematic study : impact of COVID-19 pandemic on rare disease organisations and patients across ten jurisdictions in the Asia Pacific region
Authors: Chung, Claudia Ching Yan
Ng, Yvette Nga Chung
Jain, Ritu
Chung, Brian Hon Yin
Keywords: Humanities::General
Issue Date: 2021
Source: 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
Journal: Orphanet Journal of Rare Diseases
Abstract: 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.
URI: https://hdl.handle.net/10356/152929
ISSN: 1750-1172
DOI: 10.1186/s13023-021-01766-9
Rights: © 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.
Fulltext Permission: open
Fulltext Availability: With Fulltext
Appears in Collections:SoH Journal Articles

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