The Myasthenia Gravis (MG) Patient Registry (MGR) is a voluntary, patient‐submitted database dedicated to improve understanding of care/burden of MG.
This study, conducted by a team of researchers, including Drs. Gary Cutter, Haichang Xin, Inmaculada Aban, and Mr. Phillip Allman, all from the Department of Biostatistics in the University of Alabama at Birmingham School of Public Health, presents analyses of baseline records through July 2017 (n=1140) containing data on MG Activities of Daily Living (MG‐ADL) or MG Quality of Life 15 (MG‐QOL15), two validated scales assessing quality of life in MG patients at sign‐up into the Registry.
Most registrants reported moderate to severe impairment of health‐related quality of life; median MG‐ADL of 6, median MG‐QOL15 of 21. 71 percent received pyridostigmine. Corticosteroids, mycophenolate‐mofetil and azathioprine were the most common immunomodulators/immunosuppressants, with 85 percent ever using one.; 47 percent reported receiving intravenous immunoglobulin, and 30 percent plasma exchange; 12 percent of registrants reported other treatments, 40 percent were unsure if they received less common therapies and 40 percent had undergone thymectomy.
MG Patient Registry data correlates well with other MG cohorts. Many MG patients remain negatively impacted despite treatment.Friday Letter Submission, Publish on September 20