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Cross-sectional analysis of the Myasthenia Gravis Patient Registry: Disability and treatment.


ABSTRACT: INTRODUCTION:The Myasthenia Gravis Patient Registry (MGR) is a voluntary, patient-submitted database dedicated to improve understanding of care/burden of myasthenia gravis (MG). METHODS:In this study we present analyses of baseline records through July 2017 (n = 1140) containing data on the MG-Activities of Daily Living (MG-ADL) and the MG 15-item Quality of Life (MG-QOL15) instruments, two validated scales assessing quality of life in MG patients at sign-up into the MGR. RESULTS:Most registrants reported moderate to severe impairment of health-related quality of life, with a median MG-ADL score of 6 and a median MG-QOL15 score of 21. Seventy-one percent of the patients had received pyridostigmine. Corticosteroids, mycophenolate mofetil, and azathioprine were the most common immunomodulators/immunosuppressants, with 85% of participants having ever using one of these agents. Forty-seven registrants reported receiving intravenous immunoglobulin, and 30% received plasma exchange. Twelve percent reported other treatments, and 40% were unsure whether they received less common therapies. Forty percent had undergone thymectomy. DISCUSSION:The MGR data correlate well with other MG cohorts. Many MG patients remain negatively impacted despite treatment.

SUBMITTER: Cutter G 

PROVIDER: S-EPMC6899582 | biostudies-literature | 2019 Dec

REPOSITORIES: biostudies-literature

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Cross-sectional analysis of the Myasthenia Gravis Patient Registry: Disability and treatment.

Cutter Gary G   Xin Haichang H   Aban Inmaculada I   Burns Ted M TM   Allman Phillip H PH   Farzaneh-Far Ramin R   Duda Petra W PW   Kaminski Henry J HJ  

Muscle & nerve 20191009 6


<h4>Introduction</h4>The Myasthenia Gravis Patient Registry (MGR) is a voluntary, patient-submitted database dedicated to improve understanding of care/burden of myasthenia gravis (MG).<h4>Methods</h4>In this study we present analyses of baseline records through July 2017 (n = 1140) containing data on the MG-Activities of Daily Living (MG-ADL) and the MG 15-item Quality of Life (MG-QOL15) instruments, two validated scales assessing quality of life in MG patients at sign-up into the MGR.<h4>Resul  ...[more]

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