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Multi-center Network of Multiple Sclerosis and Neuromyelitis Optical Spectrum Disorder in Korea: Results of the First Year Research

J Mult Scler > Volume 10(1); 2019 > Article
Journal of Multiple Sclerosis 2019;10(1):1-6.
Published online March 1, 2019.
국내 다발성경화증 및 시신경척수염 다기관 네트워크: 1차년도 연구 성과
이혜림1, 석진명2, 김주현3, 김호진4, 김수현4, 신하영5, 김병조6, 백설희6, 강사윤7, 오선영8, 이승한9, 권오현10, 김광국11, 임영민11, 이상수12, 오지영13, 조은빈14, 박진성15, 신경진16, 김선영17, 배종석18, 박기홍19, 허소영20, 김종국21, 윤별아21, 손은희22, 조중양23, 조혜진24, 김우준25, 홍윤호26, 안재영27, 배대웅27, 석흥열28, 김성민29, 한석근30, 민주홍31,32, 김병준31,32
1고려대학교 의과대학 고려대학교 구로병원 신경과
2순천향대학교 의과대학 천안순천향병원 신경과
3경상대학교 의과대학 경상대학교병원 신경과
Multi-center Network of Multiple Sclerosis and Neuromyelitis Optical Spectrum Disorder in Korea: Results of the First Year Research
Hye Lim Lee1, Jin Myoung Seok2, Juhyeon Kim3, Ho Jin Kim4, Su-hyun Kim4, Ha Young Shin5, Byung-Jo Kim6, Seol-Hee Baek6, Sa-Yoon Kang7, Sun-Young Oh8, Seung-Han Lee9, Ohyun Kwon10, Kwang-Kuk Kim11, Young-Min Lim11, Sang-Soo Lee12, Jeeyoung Oh13, Eun bin Cho14, Jin-Sung Park15, Kyong Jin Shin16, Sun-Young Kim17, Jong Seok Bae18, Kee Hong Park19, So-Young Huh20, Jong Kuk Kim21, Byeol-A Yoon21, Eun Hee Sohn22, Joong-Yang Cho23, Hye Jin Cho24, Woojun Kim25, Yoon-Ho Hong26, Jae Young An27, Dae Woong Bae27, Hung Youl Seok28, Sung-Min Kim29, Seok Geun Han30, Ju-Hong Min31,32, Byoung Joon Kim31,32
1Department of Neurology, Korea University Guro Hospital, Korea University College of Medicine, Seoul, Korea
2Department of Neurology, Soonchunhyang University Cheonan Hospital, Soonchunhyang University College of Medicine, Cheonan, Korea
3Department of Neurology, Gyeongsang National University Hospital, Gyeongsang National University School of Medicine, Jinju, Korea
Abstract
"Background: Multiple sclerosis (MS) and neuromyelitis optica spectrum disorder (NMOSD) are rare central nervous system (CNS) demyelinating diseases in Korea. Clinical registry and storage of bio- logical samples constitute key resources for research in the field of rare diseases and healthcare planning. Methods: We developed a national multi-center MS-NMOSD clinical network (MS-NMO NETWORK) to enroll patients with MS, NMOSD, and related disorders in Korea. The MS-NMO NETWORK collected the clinical information, using a web-based clinical research and trial database program (iCReaT). Results: Expert neurologists in the field of MS and NMOSD from 32 hospitals participated and enrolled patients from January 2017 to December 2017. A total of 164 patients were enrolled, and the clinical data from 111 patients were registered in the iCReaT. Seventy four patients (66.7%) were female and the mean age at initial attack was 38.6 years (standard deviation, 16.0). Thirty-one patients were diag- nosed as multiple sclerosis, 43 patients were NMOSD, and the other 37 patients were optic neuritis (11 patients), transverse myelitis (14 patients), demyelinating brain lesion (seven patients), clinically isolated syndrome (one patient), and any combination of these symptoms (four patients).Conclusions: We successfully established a nationwide MS-NMOSD network for CNS demyelinat- ing disease including MS and NMOSD and expect this network will be a foundational resource for further studies. Journal of Multiple Sclerosis 10(1):1-6, 2019"
Key Words: Multiple sclerosis, Neuromyelitis optica, Registry, Korea, Registries


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