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

Participatory Artificial Intelligence for Health (15) Participatory Medicine & E-Patients (979) Consumer & Patient Education and Shared-Decision Making (1257) Pediatrics (266) Caregiving and Parenting for Chronic Pediatric Diseases (148) Artificial Intelligence (4590)

Published on in Vol 18 (2026)

This is a member publication of Bibsam Consortium

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/93720, first published .
Doctor with tablet displaying medical icons and health data

Patient and Family Perspectives on Generative AI Tools in Rare Diseases: Exploratory Mixed Methods Online Survey

Patient and Family Perspectives on Generative AI Tools in Rare Diseases: Exploratory Mixed Methods Online Survey

Authors of this article:

Charlotte Blease1, 2 Author Orcid Image ;   James Jones3 Author Orcid Image ;   Catherine E Blease ;   Anna Kharko1, 4 Author Orcid Image ;   Carolina Garcia Sanchez1 Author Orcid Image ;   Kenneth D Mandl3, 5 Author Orcid Image
Article Authors Cited by Tweetations Metrics

Charlotte Blease   1, 2 , PhD ;   James Jones   3 , MPhil ;   Catherine E Blease   , MSc, MA ;   Anna Kharko   1, 4 , PhD ;   Carolina Garcia Sanchez   1 , MSc, MMSc ;   Kenneth D Mandl   3, 5 , MPH, MD

1 Department of Women's and Children's Health, Uppsala University, Uppsala, Uppsala, Sweden

2 Digital Psychiatry, Department of Psychiatry, Beth Israel Deaconess Medical Center, Boston, MA, United States

3 Computational Health Informatics Program, Boston Children’s Hospital, Boston, MA, United States

4 Centre for Primary Care and Health Services Research, University of Manchester, Manchester, England, United Kingdom

5 Departments of Pediatrics and Biomedical Informatics, Harvard Medical School, Boston, MA, United States

Corresponding Author:

  • Charlotte Blease, PhD
  • Department of Women's and Children's Health
  • Uppsala University
  • MTC-huset, Dag Hammarskjölds väg 14B, 1 tr
  • Uppsala, Uppsala 752 37
  • Sweden
  • Phone: 46 734697471
  • Email: charlotte.blease@uu.se