This paper is in the following e-collection/theme issue:

Cross-Sectional Studies in Public Health (328) Prevention and Health Promotion (1109) Health Care Quality and Health Services Research (284) Electronic/Mobile Data Capture, Internet-based Survey & Research Methodology (906)

Published on in Vol 9 (2023)

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/50147, first published .
Measurement of Health-Related Quality of Life in Individuals With Rare Diseases in China: Nation-Wide Online Survey

Measurement of Health-Related Quality of Life in Individuals With Rare Diseases in China: Nation-Wide Online Survey

Measurement of Health-Related Quality of Life in Individuals With Rare Diseases in China: Nation-Wide Online Survey

Authors of this article:

Richard Huan Xu1 Author Orcid Image ;   Shamay S M Ng1 Author Orcid Image ;   Nan Luo2 Author Orcid Image ;   Dong Dong3, 4 Author Orcid Image ;   Shuyang Zhang5 Author Orcid Image
Article Authors Cited by (5) Tweetations (2) Metrics

Journals

  1. Shi Y, Wang B, Zhao J, Wang C, Li N, Chen M, Wan X. Summary Measure of Health-Related Quality of Life and Its Related Factors Based on the Chinese Version of the Core Healthy Days Measures: Cross-Sectional Study. JMIR Public Health and Surveillance 2024;10:e52019 View
  2. Yu J, Chen S, Zhang H, Zhang S, Dong D. Patterns of the Health and Economic Burden of 33 Rare Diseases in China: Nationwide Web-Based Study. JMIR Public Health and Surveillance 2024;10:e57353 View
  3. Duan X, Zhu Y, Zheng S, Song Y, Wang W, Chen D, Zhao Z, Pan Y, Chen Z, Zhang T, Huang Y, Ren L, Ma D, Wang W, Huang S, Song Q, Wang B, Zheng Y, Li J, Wang J, Zhang Y, Guo X, Ruan W, Wang J, Gong Z, Chang X, Yuan Z, Wang F, Tian G, Meng J, Bao Z, Li L. Spectrum of Craniofacial and Oral Malformations in China, a Multicenter Study. Oral Diseases 2024 View
  4. Xu R, Rencz F, Sun R, Dong D, Zhang S. Development and Testing of the Psychometric Properties of 20 Bolt-On Items for the EQ-5D-5L Across 31 Rare Diseases. Value in Health 2025 View
  5. Dai S, Zheng J, Chen Y, Zhu J, Wang X, Peng Y, Luo Y, Lin T, Li Y, Ma M, Shi Z, Meng X, Sun L, Zhou J. A cross-sectional survey on the health status of patients with Charcot–Marie–Tooth disease in a Chinese national patient group. Journal of Neurology 2025;272(5) View