Synthetic Patient Perspective Data for the Curation and Evaluation of Rare Disease Patient-Facing Technology-Reference-Cited by-同舟云学术

Synthetic Patient Perspective Data for the Curation and Evaluation of Rare Disease Patient-Facing Technology

Published:2024 Issue: Volume: Page:330-343
ISSN:0302-9743
Container-title:Lecture Notes in Computer Science
language:en
Short-container-title:

Author:

Nielsen Emily^ORCID,Owen Tom^ORCID,Roach Matthew^ORCID,Dix Alan^ORCID

Publisher

Springer Nature Switzerland

Link

https://link.springer.com/content/pdf/10.1007/978-3-031-67285-9_24

Reference22 articles.

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2. Colomba, P., et al.: Fabry disease and multiple sclerosis misdiagnosis: the role of family history and neurological signs. Oncotarget 9, 7758–7762 (2018). https://doi.org/10.18632/oncotarget.23970

3. De Choudhury, M., Morris, M.R., White, R.W.: Seeking and sharing health information online: comparing search engines and social media. In: Proceedings of the SIGCHI Conference on Human Factors in Computing Systems, pp. 1365–1376. CHI ’14, Association for Computing Machinery, New York, NY, USA (Apr 2014). https://doi.org/10.1145/2556288.2557214

4. Department of Health UK: The UK strategy for rare diseases (2013). https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/260562/UK_Strategy_for_Rare_Diseases.pdf

5. Depping, M.K., Uhlenbusch, N., von Kodolitsch, Y., Klose, H.F.E., Mautner, V.F., Löwe, B.: Supportive care needs of patients with rare chronic diseases: multi-method, cross-sectional study. Orphanet J. Rare Dis. 16, 44 (2021). https://doi.org/10.1186/s13023-020-01660-w