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Exploring Needs and Priorities in Digital Health Management for Rare Disease Patients and their Caregivers: A Mixed-Methods Study
2026-01-30
health informatics
Title + abstract only
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Rare diseases affect millions worldwide and are associated with long diagnostic delays, limited access to treatments, and substantial challenges in daily care and coordination. Digital health technologies, including mobile apps, telehealth, and data-sharing platforms, offer opportunities to improve care and quality of life for people living with rare diseases. As these tools rapidly expand, this study examines the needs, expectations, and conditions for successful adoption of patient-centered di...
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