OptiMyG is an observational, non-interventional multicenter study of standard of care at different European myasthenia gravis centers in Europe. The purpose of the study is to map factors that are linked to the course of the  disease, including the response to administered interventions in people with recent onset myasthenia gravis. In addition, we hope to find markers in blood that can reflect disease activity. 

Led by experts in the field, our goal is to enhance understanding and treatment outcomes for patients with myasthenia gravis.

People with MG are followed up at your designated clinic within the regular healthcare system. Disease symptoms, treatment effect and possible drug side effects are registered in the regular medical record. Different assessment scales are used for grading disease symptoms, which we ask you to fill in before or in connection with a visit to the clinic. In connection with diagnosis and during routine check-ups (usually at least annually), blood samples are taken to e.g. rule out infection or influence on the immune system.

In this study, we collect information about your state of health that is in your medical record. In addition to answers to rating scales and information about your treatment for MG, it also concerns gender, age, possible co-morbidity and its treatment. In addition to the first visit, checks take place at 6, 12, 24 and 36 months, which corresponds to what we do in normal clinical routine. We also wish to collect blood samples for research purposes in connection with clinical checks (maximum 80 ml per time, corresponding to just over 5 tablespoons), which are saved in the clinic. Participation in the research study does not affect the care, treatment (including choice of medication) or follow-up you would otherwise have received.

Personal data, medical records, laboratory tests, clinical examination results, and blood samples collected during the study will be securely coded to protect your identity. The coded information will be analyzed in collaboration with academic research groups across the EU, EEA, and Switzerland. Only coded data will be shared with collaborators, who are required to sign agreements ensuring that all information is handled securely and in accordance with strict data protection guidelines. When the results of the study are published, no individual identities will be disclosed; instead, findings will be presented as group-level data only.

Participation is voluntary and can be cancelled at any time. No special compensation will be paid for participation.

The study is funded by the European Network for Rare Diseases (EJP-RD, www.ejprarediseases.org) via national funding organizations in the respective countries and has no commercial interests.