MG – CroPlat: Myasthenia Gravis - Utilising Cross Platform Quantitative Content Analysis to uncover and validate the unmet needs of Myasthenia patients
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, M.A (Integriertes Myasthenie Zentrum and Centrum für Schlaganfallforschung, Charité – Universitätsmedizin Berlin)
Registration: Link will follow.
Course of the study: August 2022