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KMID : 1022820190100010001
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Journal of Multiple Sclerosis and Neuroimmunology
2019 Volume.10 No. 1 p.1 ~ p.6
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Multi-center Network of Multiple Sclerosis and Neuromyelitis Optical Spectrum Disorder in Korea: Results of the First Year Research
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Lee Hye-Lim
Seok Jin-Myoung
Kim Ju-Hyeon
Kim Ho-Jin
Kim Su-Hyun
Shin Ha-Young
Kim Byung-Jo
Baek Seol-Hee
Kang Sa-Yoon
Oh Sun-Young
Lee Seung-Han
Kwon O-Hyun
Kim Kwang-Kuk
Lim Young-Min
Lee Sang-Soo
Oh Jee-Young
Cho Eun-Bin
Park Jin-Sung
Shin Kyong-Jin
Kim Sun-Young
Bae Jong-Seok
Park Kee-Hong
Huh Jung-Won
Kim Jong-Kuk
Yoon Byeol-A
Sohn Eun-Hee
Cho Joong-Yang
Cho Hye-Jin
Kim Woo-Jun
Hong Yoon-Ho
An Jae-Young
Seok Hung-Youl
Kim Sung-Min
Han Seok-Geun
Min Ju-Hong
Kim Byoong-Joon
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Abstract
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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.
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KEYWORD
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Multiple sclerosis, Neuromyelitis optica, Registry, Korea, Registries
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