COVID-19-associated risks and effects in myasthenia gravis (CARE-MG).

During the COVID-19 pandemic, patients with neuromuscular disorders, especially patients with autoimmune myasthenia gravis, might be at greater risk of worse outcomes than otherwise healthy people because of an immunocompromised state related to immunotherapy and possible respiratory and bulbar muscular weakness. However, cessation of immunotherapy in neuroinflammatory disorders has severe risks as well. Moreover, infections are a well recognised trigger of symptom exacerbation in patients with myasthenia gravis, and some drugs used in therapeutic trials early in the pandemic, including hydroxychloroquine and azithromycin, can provoke symptom exacerbations.

As there was no real-world evidence available at the onset of this pandemic and heightened concern existed for possible misinformation, an international group of neuromuscular physicians developed initial guidelines for managing myasthenia gravis, which were based on previous experience with viral illnesses in this patient population. However, the need for data to answer key clinical questions was quickly recognised and a registry was created to capture high-quality information about outcomes for patients with myasthenia gravis and laboratory-confirmed, or clinically suspected, COVID-19. This physician-reported registry, COVID-19 Associated Risks and Effects in Myasthenia Gravis (CARE-MG), is a joint effort of the International MG/COVID-19 Working Group and neurologists who help to take care of patients with myasthenia gravis globally and was formally launched on April 9, 2020. Registry data elements, inclusion and exclusion criteria, and research study approval are available in the appendix (appendix pp 7–8). The registry is still open and active accrual continues through electronic-form or paper-form submission of case reports. Data entry for each case submission takes approximately 10 min. Additional study details and steps for case submission are available from the Myasthenia Gravis Foundation of America website.

A total of 91 patients with myasthenia gravis were included at the time of interim analysis (Oct 5, 2020; appendix pp 10–12). Myasthenia gravis worsening or crisis requiring rescue therapy (eg, intravenous immunoglobulin, plasma exchange, or steroids) in the setting of COVID-19 was reported in 36 (40%) of 91 patients. Complete recovery or discharge to home was reported in 39 (43%) patients, whereas 22 (24%) patients died due to COVID-19.

These preliminary data suggest that a global, physician-reported registry is feasible during times of crisis, even for rare diseases, such as myasthenia gravis. Current data, which might be biased toward poor outcomes reporting, show that patients with myasthenia gravis who are infected with severe acute respiratory syndrome coronavirus 2 are frequently admitted to hospital, have disease exacerbations, and have a higher mortality than the general population with COVID-19. More neurologists and neuromuscular specialists from across the globe need to submit details of cases to the CARE-MG registry if it is to become more representative—in terms of contributing physicians, patients, and results—and provide the information necessary to enable evidence-based care for patients with myasthenia gravis during this pandemic.