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MG - CroPlat: Myasthenia Gravis - Using a cross-platform quantitative content analysis to identify and validate myasthenia patients unmet needs

Description of the study

Myasthenia Gravis (MG) is a rare neuromuscular disease that affects the transfer of impulses between muscle and nerve and causes load-dependent muscle weakness. Comprehensive care for patients by an experienced neurologist is not always given.

Social networks play an important role for patients in managing psychological challenges as well as maintaining general well-being. With this in mind, in this study, we aim to collect and evaluate questions and contributions posted in Facebook groups on MG. The user-generated content will enable us to identify the needs of MG patients and their families, and thus better tailor care and counseling services to them in the future.

Principle Investigator: Dr. Sophie Lehnerer (Integriertes Myasthenie Zentrum, Charité – Universitätsmedizin Berlin)

Study Coordinator: David Legg, MRes (Integriertes Myasthenie Zentrum and Centrum für Schlaganfallforschung, Charité – Universitätsmedizin Berlin)

Registration: DRKS00028999 (Link)

Course of the study: March - Mai 2023