Japan MG registry: Chronological surveys over 10 years
The primary purpose of the Japanese myasthenia gravis registry (JAMG‐R) has been to research and promote high‐quality medical care for MG patients in Japan. We reviewed the findings of surveys performed by JAMG‐R over an ~10‐y period. The first goal for favorable quality of life (QOL) is a status of...
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Veröffentlicht in: | Clinical & experimental neuroimmunology 2023-02, Vol.14 (1), p.5-12 |
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creator | Suzuki, Shigeaki Masuda, Masayuki Uzawa, Akiyuki Nagane, Yuriko Konno, Shingo Suzuki, Yasushi Kubota, Tomoya Sugimoto, Takamichi Samukawa, Makoto Watanabe, Genya Ishizuchi, Kei Akamine, Hiroyuki Onishi, Yosuke Yoshizumi, Kazuki Uchi, Takafumi Amino, Itaru Ueta, Yuki Minami, Naoya Kawaguchi, Naoki Kimura, Takashi Takahashi, Masanori P. Murai, Hiroyuki Utsugisawa, Kimiaki |
description | The primary purpose of the Japanese myasthenia gravis registry (JAMG‐R) has been to research and promote high‐quality medical care for MG patients in Japan. We reviewed the findings of surveys performed by JAMG‐R over an ~10‐y period. The first goal for favorable quality of life (QOL) is a status of minimal manifestations (MM) or better with an oral prednisolone (PSL) dose of 5 mg/d or less (MM‐5 mg). Early and aggressive use of nonoral fast‐acting treatment together with low‐dose oral PSL (the “EFT strategy”) is recommended to reduce disease severity with minimal oral steroid use so that the MM‐5 mg target can be met as soon as possible. We conducted the fourth largest multicenter survey ever in 2021, obtaining detailed clinical information from 1710 consecutive MG patients all over Japan, and compared the 2021 surveys with those from 2012 and 2015. The frequency of patients treated with EFT strategies showed a gradual increase, reaching 39% of the total MG patients in the 2021 survey. The current and maximum dose of PSL and the number of days at high‐dose (>20 mg/d) PSL showed decreases. Survey results indicate that as EFT strategies have spread, the percentage of patients on MM‐5 mg has increased. We again confirmed that MM‐5 mg was associated with favorable QOL in the 2021 survey. Recent data regarding COVID‐19 suggests that it did not seriously impact the MG population in Japan; unfortunately, refractory MG, observed in 21% of patients, is still an unresolved problem. |
doi_str_mv | 10.1111/cen3.12731 |
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We reviewed the findings of surveys performed by JAMG‐R over an ~10‐y period. The first goal for favorable quality of life (QOL) is a status of minimal manifestations (MM) or better with an oral prednisolone (PSL) dose of 5 mg/d or less (MM‐5 mg). Early and aggressive use of nonoral fast‐acting treatment together with low‐dose oral PSL (the “EFT strategy”) is recommended to reduce disease severity with minimal oral steroid use so that the MM‐5 mg target can be met as soon as possible. We conducted the fourth largest multicenter survey ever in 2021, obtaining detailed clinical information from 1710 consecutive MG patients all over Japan, and compared the 2021 surveys with those from 2012 and 2015. The frequency of patients treated with EFT strategies showed a gradual increase, reaching 39% of the total MG patients in the 2021 survey. The current and maximum dose of PSL and the number of days at high‐dose (>20 mg/d) PSL showed decreases. Survey results indicate that as EFT strategies have spread, the percentage of patients on MM‐5 mg has increased. We again confirmed that MM‐5 mg was associated with favorable QOL in the 2021 survey. Recent data regarding COVID‐19 suggests that it did not seriously impact the MG population in Japan; unfortunately, refractory MG, observed in 21% of patients, is still an unresolved problem.</description><identifier>ISSN: 1759-1961</identifier><identifier>EISSN: 1759-1961</identifier><identifier>DOI: 10.1111/cen3.12731</identifier><language>eng</language><subject>early fast‐acting treatment strategies ; Japan registry ; minimal manifestations ; myasthenia gravis ; myasthenia gravisCOVID‐19 ; quality of life</subject><ispartof>Clinical & experimental neuroimmunology, 2023-02, Vol.14 (1), p.5-12</ispartof><rights>2022 The Authors. published by John Wiley & Sons Australia, Ltd on behalf of Japanese Society for Neuroimmunology.</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c3141-40ed71cecbfd3c57f1aa29e5b37227d330b206004390f688f9a75f21eee489f03</citedby><cites>FETCH-LOGICAL-c3141-40ed71cecbfd3c57f1aa29e5b37227d330b206004390f688f9a75f21eee489f03</cites><orcidid>0000-0003-4388-4574 ; 0000-0003-3652-0772</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://onlinelibrary.wiley.com/doi/pdf/10.1111%2Fcen3.12731$$EPDF$$P50$$Gwiley$$Hfree_for_read</linktopdf><linktohtml>$$Uhttps://onlinelibrary.wiley.com/doi/full/10.1111%2Fcen3.12731$$EHTML$$P50$$Gwiley$$Hfree_for_read</linktohtml><link.rule.ids>314,776,780,1411,27903,27904,45553,45554</link.rule.ids></links><search><creatorcontrib>Suzuki, Shigeaki</creatorcontrib><creatorcontrib>Masuda, Masayuki</creatorcontrib><creatorcontrib>Uzawa, Akiyuki</creatorcontrib><creatorcontrib>Nagane, Yuriko</creatorcontrib><creatorcontrib>Konno, Shingo</creatorcontrib><creatorcontrib>Suzuki, Yasushi</creatorcontrib><creatorcontrib>Kubota, Tomoya</creatorcontrib><creatorcontrib>Sugimoto, Takamichi</creatorcontrib><creatorcontrib>Samukawa, Makoto</creatorcontrib><creatorcontrib>Watanabe, Genya</creatorcontrib><creatorcontrib>Ishizuchi, Kei</creatorcontrib><creatorcontrib>Akamine, Hiroyuki</creatorcontrib><creatorcontrib>Onishi, Yosuke</creatorcontrib><creatorcontrib>Yoshizumi, Kazuki</creatorcontrib><creatorcontrib>Uchi, Takafumi</creatorcontrib><creatorcontrib>Amino, Itaru</creatorcontrib><creatorcontrib>Ueta, Yuki</creatorcontrib><creatorcontrib>Minami, Naoya</creatorcontrib><creatorcontrib>Kawaguchi, Naoki</creatorcontrib><creatorcontrib>Kimura, Takashi</creatorcontrib><creatorcontrib>Takahashi, Masanori P.</creatorcontrib><creatorcontrib>Murai, Hiroyuki</creatorcontrib><creatorcontrib>Utsugisawa, Kimiaki</creatorcontrib><title>Japan MG registry: Chronological surveys over 10 years</title><title>Clinical & experimental neuroimmunology</title><description>The primary purpose of the Japanese myasthenia gravis registry (JAMG‐R) has been to research and promote high‐quality medical care for MG patients in Japan. We reviewed the findings of surveys performed by JAMG‐R over an ~10‐y period. The first goal for favorable quality of life (QOL) is a status of minimal manifestations (MM) or better with an oral prednisolone (PSL) dose of 5 mg/d or less (MM‐5 mg). Early and aggressive use of nonoral fast‐acting treatment together with low‐dose oral PSL (the “EFT strategy”) is recommended to reduce disease severity with minimal oral steroid use so that the MM‐5 mg target can be met as soon as possible. We conducted the fourth largest multicenter survey ever in 2021, obtaining detailed clinical information from 1710 consecutive MG patients all over Japan, and compared the 2021 surveys with those from 2012 and 2015. The frequency of patients treated with EFT strategies showed a gradual increase, reaching 39% of the total MG patients in the 2021 survey. The current and maximum dose of PSL and the number of days at high‐dose (>20 mg/d) PSL showed decreases. Survey results indicate that as EFT strategies have spread, the percentage of patients on MM‐5 mg has increased. We again confirmed that MM‐5 mg was associated with favorable QOL in the 2021 survey. Recent data regarding COVID‐19 suggests that it did not seriously impact the MG population in Japan; unfortunately, refractory MG, observed in 21% of patients, is still an unresolved problem.</description><subject>early fast‐acting treatment strategies</subject><subject>Japan registry</subject><subject>minimal manifestations</subject><subject>myasthenia gravis</subject><subject>myasthenia gravisCOVID‐19</subject><subject>quality of life</subject><issn>1759-1961</issn><issn>1759-1961</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2023</creationdate><recordtype>article</recordtype><sourceid>24P</sourceid><recordid>eNp9j7FOwzAURS0EElXpwhd4Rkrxs53YYUNRaUEFFpgtx3kuQSGpbCjKxspv8iWkhIGJu7w7nHelQ8gpsDkMOXfYijlwJeCATECleQJ5Bod_-jGZxfjMhgitpZITom_s1rb0dkkDbur4GvoLWjyFru2ablM729D4FnbYR9rtMFBgXx-fPdoQT8iRt03E2e-dkserxUOxStb3y-vicp04ARISybBS4NCVvhIuVR6s5TmmpVCcq0oIVnKWMSZFznymtc-tSj0HRJQ690xMydm460IXY0BvtqF-saE3wMxe2-y1zY_2AMMIv9cN9v-QpljcifHnG-J5WUw</recordid><startdate>202302</startdate><enddate>202302</enddate><creator>Suzuki, Shigeaki</creator><creator>Masuda, Masayuki</creator><creator>Uzawa, Akiyuki</creator><creator>Nagane, Yuriko</creator><creator>Konno, Shingo</creator><creator>Suzuki, Yasushi</creator><creator>Kubota, Tomoya</creator><creator>Sugimoto, Takamichi</creator><creator>Samukawa, Makoto</creator><creator>Watanabe, Genya</creator><creator>Ishizuchi, Kei</creator><creator>Akamine, Hiroyuki</creator><creator>Onishi, Yosuke</creator><creator>Yoshizumi, Kazuki</creator><creator>Uchi, Takafumi</creator><creator>Amino, Itaru</creator><creator>Ueta, Yuki</creator><creator>Minami, Naoya</creator><creator>Kawaguchi, Naoki</creator><creator>Kimura, Takashi</creator><creator>Takahashi, Masanori P.</creator><creator>Murai, Hiroyuki</creator><creator>Utsugisawa, Kimiaki</creator><scope>24P</scope><scope>AAYXX</scope><scope>CITATION</scope><orcidid>https://orcid.org/0000-0003-4388-4574</orcidid><orcidid>https://orcid.org/0000-0003-3652-0772</orcidid></search><sort><creationdate>202302</creationdate><title>Japan MG registry: Chronological surveys over 10 years</title><author>Suzuki, Shigeaki ; 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We reviewed the findings of surveys performed by JAMG‐R over an ~10‐y period. The first goal for favorable quality of life (QOL) is a status of minimal manifestations (MM) or better with an oral prednisolone (PSL) dose of 5 mg/d or less (MM‐5 mg). Early and aggressive use of nonoral fast‐acting treatment together with low‐dose oral PSL (the “EFT strategy”) is recommended to reduce disease severity with minimal oral steroid use so that the MM‐5 mg target can be met as soon as possible. We conducted the fourth largest multicenter survey ever in 2021, obtaining detailed clinical information from 1710 consecutive MG patients all over Japan, and compared the 2021 surveys with those from 2012 and 2015. The frequency of patients treated with EFT strategies showed a gradual increase, reaching 39% of the total MG patients in the 2021 survey. The current and maximum dose of PSL and the number of days at high‐dose (>20 mg/d) PSL showed decreases. Survey results indicate that as EFT strategies have spread, the percentage of patients on MM‐5 mg has increased. We again confirmed that MM‐5 mg was associated with favorable QOL in the 2021 survey. Recent data regarding COVID‐19 suggests that it did not seriously impact the MG population in Japan; unfortunately, refractory MG, observed in 21% of patients, is still an unresolved problem.</abstract><doi>10.1111/cen3.12731</doi><tpages>8</tpages><orcidid>https://orcid.org/0000-0003-4388-4574</orcidid><orcidid>https://orcid.org/0000-0003-3652-0772</orcidid><oa>free_for_read</oa></addata></record> |
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subjects | early fast‐acting treatment strategies Japan registry minimal manifestations myasthenia gravis myasthenia gravisCOVID‐19 quality of life |
title | Japan MG registry: Chronological surveys over 10 years |
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