In Spring 2020, The MOG Project partnered with the Siegel Rare Neuroimmune Association and The Sumaira Foundation for NMO to understand treatment practices among those with MOG antibody disease (MOGAD). The intention of the survey was to learn from the MOGAD community experience and share results with physicians and each other.
267 individuals with MOGAD and their caregivers completed a survey asking a range of questions regarding acute and preventive treatments and their associated side effects. 89% of respondents had been prescribed an acute treatment during their most recent attack/relapse, the most commonly prescribed being IV Steroids (86%) followed by Oral Steroids (50%). Nearly 70% of those diagnosed with MOGAD are currently on a preventive treatment. Rituximab (45%), Mycophenolate Mofetil (25%) and IVIG (25%) were cited as commonly prescribed preventive treatments. Side effects were common, with 66% of respondents reporting side effects from their acute treatments. 49% of those on Rituximab, 32% on Mycophenolate Mofetil, and 53% on IVIG reported side effects from their treatments.
It is important to note that this respondent pool may skew towards patients with more severe cases of MOGAD, as these people may have been more likely to respond to the survey. You can view the detailed survey results here. Special thanks to the members of the MOGAD community and their caregivers for participating in this survey. It is our hope that these survey results help those affected by MOGAD know they are not alone; ours is a shared experience as a community.