2026-10-10T14:31:45Z https://api.figshare.com/v2/oai

oai:figshare.com:article/34016818 2026-09-28T17:37:52Z category_734 category_64 category_106 portal_5 item_type_3 month_year_09_2026

<p>Survey respondents’ interest in using digital health tools to support rare disease management (n = 149).</p> Anita Burgun (65313) Christina Khnaisser (25132741) Roxanne Dault (9524277) Jean-François Ethier (11066357) Biological Sciences not elsewhere classified Cancer Science Policy resource &# 8209 patient &# 8209 long diagnostic delays guide future research future digital solutions surveyed 149 patients participants strongly emphasized digital health management tools rapidly expand data &# 8209 centered digital solutions mixed &# 8209 rare disease patients simplify daily life digital health technologies digital tools centered tools tele health place patients 15 participants wide data generated data rare diseases daily care supporting people successful adoption substantial challenges study examines stressful situations sharing platforms related barriers reduce travel people living offer opportunities methods design limited access information exchange incorporate ai improved communication highlights technological focus groups findings highlight essential role emergency situations conducted follow <p>Survey respondents’ interest in using digital health tools to support rare disease management (n = 149).</p> 2026-09-28T17:37:45Z Dataset Dataset 10.1371/journal.pdig.0001240.t002 https://figshare.com/articles/dataset/_p_Survey_respondents_interest_in_using_digital_health_tools_to_support_rare_disease_management_n_149_p_/34016818 CC BY 4.0