Patient and family social media use surrounding a novel treatment for a rare genetic disease: a qualitative interview study.
Abstract
Advances in gene therapy and precision medicine have led to a growing number of novel treatments for rare genetic diseases. Patients/families may lack access to up-to-date, accurate, and relevant information about these treatments. Social media offers one potentially important resource for these communities. Our goal was to understand how patients/families with spinal muscular atrophy (SMA)—a rare genetic condition—used social media to share,...
Paper Details
Title
Patient and family social media use surrounding a novel treatment for a rare genetic disease: a qualitative interview study.
Published Date
Jun 30, 2020
Journal
Volume
22
Issue
11
Pages
1830 - 1837
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Notes
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