Lu sur : https://www.ncbi.nlm.nih.gov/pubmed/31487038
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Muscle Nerve. 2019 Sep 5. doi: 10.1002/mus.26695. [Epub ahead of print]
Cross-Sectional Analysis of the Myasthenia Gravis Patient Registry: Disability and Treatment.
Cutter G1, Xin H1, Aban I1, Burns TM2, Allman PH1, Farzaneh Far R3, Duda PW3, Kaminski HJ4.
The Myasthenia Gravis (MG) Patient Registry (MGR) is a voluntary, patient-submitted database dedicated to improve understanding of care/burden of MG.
This study 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% received pyridostigmine. Corticosteroids, mycophenolate-mofetil and azathioprine were the most common immunomodulators/immunosuppressants, with 85% ever using one. 47% reported receiving intravenous immunoglobulin, and 30% plasma exchange. 12% of registrants reported other treatments, 40% were unsure if they received less common therapies. 40% had undergone
MG Patient Registry data correlates well with other MG cohorts. Many MG patients remain negatively impacted despite treatment.
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