RWE RavEcu: Treatment satisfaction of myasthenia patients under complement inhibitors in standard clinical care in Germany - a multicenter observational study

Study description:

Myasthenia gravis (MG) is a rare autoimmune disease, whose main symptom is a fluctuating muscle weakness, which can affect all muscles of the body (including respiratory muscles).

A group of drugs called complement inhibitors (here eculizumab and ravulizumab) are used for therapy. Up to now, there are no data on the use of these drugs in regular clinical care with larger and heterogeneous patient groups, nor on the subjective or personal treatment satisfaction of patients treated with these drugs.

The aim of this study is to increase the understanding of the effects of complement inhibitor therapy with particular focus on the question how satisfied  patients are with the therapy.

Although drug therapies continue to be assessed primarily on the basis of improvement in objective scales or scores, surveys of subjective patient perspectives are increasingly influential in the assessment of new drug therapies. We therefore expect that the results of this study will find their way into future therapy recommendations for myasthenia gravis.

This study is open to all patients who, together with their treating physicians, have decided to start therapy with a complement inhibitor (either eculizumab or ravulizumab). In addition, patients who are planning to switch within the complement inhibitor group (e.g. from eculizumab to ravulizumab) may participate. 

Contact: Dr. med. Lea Gerischer (lea.gerischer@charite.de)

Principal Investigator: Prof. Dr. Andreas Meisel

Study Coordination: Dr. med. Lea Gerischer

Registration: The study is registered in the DRKS: DRKS00030410

Duration of the study: (start) 11/2022 - (expected end) 11/2024

Project partner: here

Funding: by Alexion Pharma Germany