视神经脊髓炎
Neuromyelitis optica spectrum disorder
定义 英文原文(暂无中文)
A rare inflammatory disease of the central nervous system characterized mainly by attacks of uni- or bilateral optic neuritis (ON) and acute myelitis.
别名
Devic病
基本事实
- 遗传方式
- 多基因/多因素
- 发病年龄
- 青少年期、成年期、儿童期、老年期
- 患病率
- 1-9 / 1 000 000(Martinique)
临床表型 17
极常见 99–80%10
- 自身免疫性抗体阳性 HP:0030057
- 膀胱功能异常 HP:0000009
- 脊髓炎 HP:0012486
- 中枢神经系统神经元损失 HP:0002529
- 眼痛 HP:0200026
- 视神经炎 HP:0100653
- 截瘫 HP:0010550
- 周围性脱髓鞘 HP:0011096
- 躯体感觉异常 HP:0003474
- 视力丧失 HP:0000572
常见 79–30%2
- 脑形态学异常 HP:0012443
- 抗水通道蛋白 4 抗体阳性 HP:0033342
偶见 29–5%5
- 抗髓磷脂少突胶质细胞糖蛋白抗体阳性 HP:0032492
- 脑脊液细胞增多 HP:0012229
- 恶心 HP:0002018
- 反复性嗝逆 HP:0100247
- 呼吸衰竭 HP:0002878
近两年的全球研究 2,144L2
2024/10 起在 Europe PMC 检索所得,按发表时间倒序显示最近 20 篇。标题未译成中文——自动翻译需要接入 LLM 服务,尚未引入。
- 2026-10综述开放获取Chimeric antigen receptor T (CAR-T) cell therapy in non-oncological diseases
- 2026-10开放获取Targeting the HPGDS-PGD<sub>2</sub> axis to treat Th17 cell-mediated autoimmunity in multiple sclerosis
- 2026-10开放获取Serum GFAP and Age Accurately Distinguish AQP4-IgG Positive and Double Seronegative NMOSD From MOGAD After a Recent Attack
- 2026-10Evolution of Therapeutic Plasma Exchange Use and Outcomes in Children Across American Society for Apheresis Categories: A Single-Center Cohort Study
- 2026-10开放获取The Association of Apparent Myelin Water Fraction With Diffusional Kurtosis and Biophysical Modeling Parameters
- 2026-09综述Eculizumab and Ravulizumab During Pregnancy in Neuromyelitis Optica Spectrum Disorder and Myasthenia Gravis: Balancing Maternal Disease Control and Fetal Safety
- 2026-09开放获取Real‑world pharmacovigilance of rituximab‑associated adverse reactions in children and adolescents: Disproportionality signal detection and time‑to‑onset pattern characterization using the FAERS database
- 2026-09综述开放获取The Immune Checkpoint Inhibitors Journey: From Early Promise to Lasting Impact
- 2026-09综述Use of MRI in neuromyelitis optica spectrum disorder and myelin oligodendrocyte glycoprotein antibody-associated disease - MAGNIMS consensus recommendations
- 2026-09MRI Characteristics of Myelin Oligodendrocyte Glycoprotein Antibody-Associated Disease: A Review
- 2026-09综述Metabolic reprogramming in neuromyelitis optica spectrum disorder: From astrocyte dysfunction to immune-mediated neuroinflammation
- 2026-09Diagnostic delay and poor functional outcomes in late-onset NMOSD: A Thai cohort study
- 2026-09综述Stem Cell-Based Therapies for Central Nervous System Demyelinating Diseases: Clinical Evidence, Therapeutic Niches, and Translational Boundaries
- 2026-09开放获取Human Autoantibodies Against MOG Isoforms: α3 Antibodies Suggest Relapsing Disease Course in Myelin Oligodendrocyte Glycoprotein Antibody-Associated Disease
- 2026-09开放获取Spatial organization of AQP4 water channel expression in the human brain
- 2026-09开放获取Diagnostic Utility of Novel and Established Spinal MRI Signs in AQP4-IgG-Seropositive NMOSD Myelitis
- 2026-09From Lesion Length to Lesion Pattern in Neuromyelitis Optica Spectrum Disorder Myelitis: Implications for Diagnostic Criteria
- 2026-09综述Optimizing the management of AQP4 antibody-positive NMOSD: A Canadian consensus
- 2026-09综述开放获取Epstein-Barr Virus: More than Just an Infection
- 2026-09Meningococcal infection in patients receiving eculizumab or ravulizumab for generalized myasthenia gravis or neuromyelitis optica spectrum disorder: A real-world study of US clinical practice
国家医保药品目录中点名本病的药品 2L2
出自《国家基本医疗保险、生育保险和工伤保险药品目录(2025年)》(医保发〔2025〕33号,2026-01-01 起执行)。下列药品在药品名称或限定支付范围里出现了本病的名称。
匹配不到 ≠ 不能报销。目录里只有约一成药品设了限定支付范围,其余按适应症正常使用同样可报销;本区块只能回答「目录有没有点名这个病」,不能回答「这个病有没有药能报销」。各省执行细则、双通道与单独支付范围另有规定,请以当地医保部门口径为准。
- 伊奈利珠单抗注射液乙类谈判药品限抗水通道蛋白4(AQP4)抗体阳性的视神经脊髓炎谱系疾病(NMOSD)成人患者。
- 萨特利珠单抗注射液乙类谈判药品限≥12岁青少年及成人患者水通道蛋白4(AQP4)抗体阳性的视神经脊髓炎谱系疾病(NMOSD)。
境外已获批用于本病的药物 6L2
欧盟 2 项、美国 4 项。同一药物在两地各批一次的,会分别列出。
「境外已获批」不等于「在中国能用」。中间隔着进口注册、临床急需境外新药通道、海南博鳌乐城国际医疗旅游先行区等几条路径,各有各的条件与费用。这一节能确定地告诉你的只有一件事:这个病在世界范围内已经有获得批准的药物,它叫什么名字。拿这个名字去问主治医生,是下一步最省力的做法。
药名一律保留英文原文,不作翻译——中国的药品通用名与英文名的音译经常不一致,译错会让人去找一个不存在的药。
- Enspryng欧盟2021-06-24satralizumab官方记录
- Uplizna欧盟2022-04-25inebilizumab官方记录
- Soliris美国2019-06-27eculizumab官方记录
- Uplizna美国2020-06-11inebilizumab官方记录
- Enspryng美国2020-08-14satralizumab-mwge官方记录
- Ultomiris美国2024-03-22ravulizumab-cwvz官方记录
尚未获批的在研药物(4 项)
这些药已被欧盟或美国的监管机构认定为罕见病用药(英文 orphan drug designation,中文行业里通称「孤儿药资格」——「孤儿」说的是这类药市场太小、没有厂商愿意认领,不是在说病人)。但这只是一种监管身份:意味着监管机构给予研发上的激励,不代表这个药已被证明有效,也不代表将来一定能上市,绝大多数最终不会成药。列在这里是为了看清有哪些方向正在被尝试。
- cladribine美国2015-03-19Treatment of neuromyelitis optica and neuromyelitis optica spectrum disorder官方记录
- ublituximab美国2016-08-25Treatment of neuromyelitis optica and neuromyelitis optica spectrum disorder官方记录
- Edralbrutinib美国2023-04-24Treatment of neuromyelitis optica spectrum disorder官方记录
- rituximab美国2026-02-02treatment of neuromyelitis optica spectrum disorder官方记录
数据来自欧洲药品管理局(EMA)的药品与罕见病用药资格公开导出表,以及美国 FDA 的罕见病用药资格数据库(Orphan Drug Product Designation Database)。两边口径不同:欧盟一侧取的是当前状态仍为「已授权」的药品;美国一侧记录的是「曾获批准」这一事实,FDA 的公开表不追踪药物此后是否退市(例如 Relyvrio 于 2024 年撤市,表中仍记为已获批)。请以官方记录页为准。
在中国开展的临床试验 75L2
按病名在 ClinicalTrials.gov 检索、并校验研究中心含中国大陆而来。登记状态不等于现在真的能入组——务必按 NCT 号到原站核实,并与主治医生商量。
登记为可入组 35
- 招募中NCT04106830Clinical and Imaging Cohort of Neuroinflammation Diseases in China (CLUE)中国研究中心 1 个:Beijing
- 招募中NCT04561557Safety and Efficacy of CT103A Cells for Relapsed/Refractory Antibody-associated Inflammatory Diseases of the Nervous System中国研究中心 1 个:Wuhan
- 招募中NCT05154370China National Registry of Neuro-Inflammatory Diseases中国研究中心 1 个:Beijing
- 招募中NCT05145361Clinical Study of B001 Injection in Subjects With Neuromyelitis Optic Spectrum Disorder (NMOSD)中国研究中心 4 个:Beijing、Taiyuan、Tianjin、Xi’an
- 招募中NCT05504694Ofatumumab in AQP4-IgG Seropositive NMOSD中国研究中心 1 个:Xi'an
- 招募中NCT06697535A Study to Evaluate the Efficacy and Safety of JYP0061 in Patients With Acute Neuromyelitis Spectrum Disease (NMOSD)中国研究中心 1 个:Changsha
- 仅邀请入组NCT06643858Normal Chinese Lifespan Brain Charts Initiative (NCLBCI)中国研究中心 1 个:Beijing
- 招募中NCT06541626Sun Yat-Sen Cohort of CNS Idiopathic Inflammatory Demyelinating Diseases中国研究中心 1 个:Guangzhou
- 招募中NCT05966467Registry of Patients With AQP4+ NMOSD Treated With Alexion C5 Inhibitor Therapies中国研究中心 6 个:Beijing、Guangzhou、Henan、Shanghai、Sichuan、Wuhan
- 招募中NCT06249438A Study of C-CAR168 in the Treatment of Autoimmune Diseases Refractory to Standard Therapy中国研究中心 1 个:Shanghai
- 招募中NCT07653984Cohort Study on Neuroimmune Diseases in the Reproductive Age中国研究中心 1 个:Guangzhou
- 招募中NCT06413654A Clinical Study of B001 Injection in the Treatment of Neuromyelitis Optica Spectrum Disorders(NMOSD)中国研究中心 51 个:Beijing、Cangzhou、Changsha、Chengdu、Fuzhou、Guangzhou 等 33 地
- 招募中NCT06502015Biomarkers in Autoimmune Disease of Nervous System中国研究中心 1 个:Wuhan
- 招募中NCT06474520Efficacy and Safety of Calculus Bovis Sativus (CBS) for Idiopathic Inflammatory Demyelinating Disease (CBSinIIDD)中国研究中心 1 个:Wuhan
- 尚未开始招募NCT06485232Universal CAR-T Cells in Patients with Refractory Autoimmune Diseases of the Nervous System.中国研究中心 1 个:Beijing
- 招募中NCT06620809The Safety and Efficacy of NouvSoma001 in Neuromyelitis Optica Spectrum Disorders中国研究中心 1 个:Wuhan
- 招募中NCT06829524HANDLE-a Real World Study on Satralizumab in NMOSD中国研究中心 1 个:Shanghai
- 招募中NCT07022197Safety and Efficacy of BAFF-R CART for Refractory Neuroimmune Diseases中国研究中心 1 个:Tianjin
- 招募中NCT06763848Protein A immuNoaDsorption for the Treatment of Acute Episodes of Neuromyelitis Optica Spectrum Disorder中国研究中心 1 个:Guangzhou
- 招募中NCT06939166Universal Chimeric Antigen Receptor T-Cell (UCAR T-cell) Therapy Targeting CD19/B Cell Maturation Antigen (CD19/BCMA) in Patients With r/r Neurological Autoimmune Diseases中国研究中心 1 个:Tianjin
- 招募中NCT06885957Monoclonal Antibody-Based Therapies for AQP4-Positive NMOSD中国研究中心 1 个:Wuhan
- 尚未开始招募NCT07266051Prospective Cohort Study of Neuromyelitis Optica Spectrum Disorders (NMOSD)中国研究中心 5 个:Xiamen
- 招募中NCT07377305Efficacy and Safety of Transcranial Temporal Interference Stimulation (tTIS) for Neuropathic Pain in Neuromyelitis Optica Spectrum Disorder (NMOSD)中国研究中心 1 个:Xi'an
- 招募中NCT07420296Modified Zipper Therapy for AQP4-IgG Positive Neuromyelitis Optica Spectrum Disorder中国研究中心 1 个:Tianjin
- 招募中NCT07410039Therapy in the Acute Phase of NMOSD: A Multicenter Prospective Real-World Study中国研究中心 1 个:Beijing
另有 10 项未列出。
其他状态的试验(40 项)
- 状态未知NCT02021825Efficacy and Safety of Mitoxantrone in Patients With Refractory Neuromyelitis Optica and Spectrum Disorders中国研究中心 1 个:Beijing
- 状态未知NCT01364246Safety and Efficacy of Umbilical Cord Mesenchymal Stem Cell Therapy for Patients With Progressive Multiple Sclerosis and Neuromyelitis Optica中国研究中心 1 个:Nanjing
- 已完成NCT02249676Autologous Mesenchymal Stem Cells for the Treatment of Neuromyelitis Optica Spectrum Disorders中国研究中心 1 个:Tianjin
- 状态未知NCT02836327Multimodel Magnetic Resonance Imaging (MRI)of Multiple Sclerosis and Neuromyelitis Optica Spectrum Disorders中国研究中心 1 个:Beijing
- 已完成NCT02893111Efficacy and Safety of Bortezomib as add-on Treatment in Relapsing Neuromyelitis Optica Spectrum Disorder中国研究中心 1 个:Tianjin
- 已完成NCT03062579A Longitudinal Study of ACTEMRA® (Tocilizumab) as Monotherapy in Highly Active NMOSD中国研究中心 1 个:Tianjin
- 已完成NCT03350633Tocilizumab vs Azathioprine in Neuromyelitis Optica Spectrum Disorders中国研究中心 1 个:Tianjin
- 已终止NCT03330418A Phase III Study of TACI-antibody Fusion Protein Injection (RC18) in Subjects With Neuromyelitis Optica Spectrum Disorders中国研究中心 1 个:Beijing
- 状态未知NCT03514030Clinic Registry Study of Optic Neuromyelitis Spectrum Disease in China中国研究中心 1 个:Beijing
- 已撤回NCT03605238Treatment of Relapsed and/or Refractory AQP4-IgG Seropositive NMOSD by Tandem CAR T Cells Targeting CD19 and CD20中国研究中心 1 个:Beijing
- 状态未知NCT04101058Treatment Response Among Chinese Neuromyelitis Optica Spectrum Disorders中国研究中心 1 个:Guangzhou
- 已完成NCT05896605Monitoring of Azathioprine Metabolite Concentrations and Cytokine Levels in Neuromyelitis Optica Spectrum Disorder中国研究中心 1 个:Nanning
- 已完成NCT04227470A Study of HBM9161 in NMOSD Patients中国研究中心 1 个:Guangzhou
- 已完成NCT04388072An Diagnostic Cohort on AQP4-Immunoglobulin G Detection Kit中国研究中心 2 个:Fuzhou、Guangzhou
- 已完成NCT04146285A Phase I Clinical Trial of BAT4406F Injection in Patients With Neuromyelitis Optica Spectrum Disorders中国研究中心 1 个:Shanghai
- 状态未知NCT04601142Association Between the Effect of Glucocorticoid Pulse Therapy on Neuromyelitis Optica (NMO) and Gene Polymorphism中国研究中心 1 个:Beijing
- 状态未知NCT06443333National, Multicentric Registry Study on Neuroimmunological Diseases in China中国研究中心 1 个:Beijing
- 已完成NCT04670770An Open Label Study of the Effects of SHR1459 in NMOSDs Patients中国研究中心 8 个:Changsha、Chengdu、Lanzhou、Rizhao、Shanghai、Taiyuan 等 8 地
- 已完成NCT05154734Efficacy and Safety of Belimumab in Neuromyelitis Optica Spectrum Disorders中国研究中心 1 个:Tianjin
- 已完成NCT05871658Efficacy of Electroacupuncture in NMOSD Patients With Pain: Study Protocol中国研究中心 1 个:Guangzhou
- 状态未知NCT05284175A Study of Orelabrutinib in Patients With AQP4-IgG Positive Neuromyelitis Optica Spectrum Disorder中国研究中心 1 个:Beijing
- 已终止NCT05356858An Open Label Study of the Effects and Safety of Zanubrutinib in NMOSDs Adult Patients中国研究中心 1 个:Beijing
- 已完成NCT05432713A Study of LP-168 in Healthy Volunteers中国研究中心 1 个:Hangzhou
- 状态未知NCT05414890Sensitivity and Specificity of TSA-CBA for Autoantibodies Against Neural Antigen Determination中国研究中心 1 个:Beijing
- 进行中·不再招募NCT05314010A Study of MIL62 in Patients With Neuromyelitis Optica Spectrum Disorder (NMOSD)中国研究中心 1 个:Beijing
- 状态未知NCT05414487Effects of Ofatumumab Treatment on Immune Cells and Meningeal Lymphatic Drainage in Patients With Demyelinating Diseases中国研究中心 1 个:Tianjin
- 进行中·不再招募NCT05403138Safety and Efficacy of Daratumumab in Patients With Anti-Aquaporin 4 Antibody Positive Neuromyelitis Optica Spectrum Disorders中国研究中心 1 个:Tianjin
- 已完成NCT05551598Efficacy and Safety of Mitoxantrone Hydrochloride Liposome Injection in the Treatment of Neuromyelitis Optica Spectrum Disorder (NMOSD)中国研究中心 1 个:Beijing
- 进行中·不再招募NCT05792462Efficacy and Safety of Baricitinib in Neuromyelitis Optica Spectrum Disorders中国研究中心 1 个:Tianjin
- 已完成NCT05828212Evaluate the Safety and Efficacy of CAR-T Cells in the Treatment of R/R Neuromyelitis Optica中国研究中心 1 个:Hangzhou
- 进行中·不再招募NCT06044350A Clinical Trial of BAT4406F Injection in Patients With Neuromyelitis Optica Spectrum Disorders中国研究中心 45 个:Baotou、Beijing、Changsha、Chongqing、Dalian、Fuzhou 等 31 地
- 已完成NCT06888622BLAZE-Limiting Approach in NMOSD中国研究中心 1 个:Shanghai
- 状态未知NCT06212245A Clinical Research Study of Inebilizumab in Neuromyelitis Optica Spectrum Disorders中国研究中心 1 个:Beijing
- 进行中·不再招募NCT06180278Long-term, Open-label, Safety Study of Inebilizumab in Neuromyelitis Optica Spectrum Disorder (NMOSD)中国研究中心 1 个:Hong Kong
- 已撤回NCT05909943Efficacy and Safety of Ruxolitinib in Neuromyelitis Optica Spectrum Disorders中国研究中心 1 个:Tianjin
- 状态未知NCT05891379Inebilizumab in Acute Neuromyelitis Optica Spectrum Disorders中国研究中心 1 个:Beijing
- 已撤回NCT06548620A Study of RD06-04 in Patients With Active Autoimmune Diseases中国研究中心 1 个:Zhengzhou
- 进行中·不再招募NCT06724809Efficacy, Safety, PK, PD, and ADA of Eculizumab in Chinese Adults With NMOSD中国研究中心 7 个:Beijing、Dongguan、Jinan、Shanghai、Taiyuan、Wenzhou 等 7 地
- 已撤回NCT06869278A Study of LCAR-AIO CAR-T Cells for Treating Relapsed/Refractory Neurological Autoimmune Diseases中国研究中心 3 个:Fuzhou、Suzhou、Wuhan
- 进行中·不再招募NCT07184840Eculizumab For the Acute Attack of Neuromyelitis Optica Spectrum Disorder中国研究中心 1 个:Tianjin
中国境外的在招试验 73L2
这些试验在中国没有研究中心,通常无法直接报名——入组一般要求在当地居住并接受随访。列在这里是因为它另有用处:看清楚全世界正在试哪些药、做到了哪一期、由谁在做。把药名和 NCT 编号记下来去问主治医生,或据此进一步查该药是否已在境外获批、是否有拓展性用药(expanded access)通道。
CT.gov 报告命中 73 项,此处取回并展示最近的 15 项。
- 尚未开始招募NCT07595965Evaluate the Safety and Tolerability of CE211NS21 in Patients With AQP4-IgG-positive NMOSD Relapse
- 尚未开始招募NCT07818356Comparative Study of Two Vaccination Schedules for the Subunit Herpes Zoster Vaccine in Multiple Sclerosis and Neuromyelitis Optica Spectrum Disease Patients Treated With Anti-CD20 Therapy: an Open-label Randomised Controlled Trial法国
- 招募中NCT05909761Observational Safety Study in Women With Neuromyelitis Optica Spectrum Disorder (NMOSD) Exposed to UPLIZNA® During Pregnancy美国
- 尚未开始招募NCT07804004A Safety and Efficacy Study Evaluating CTX112 in Subjects With Refractory Neurologic Autoimmune Disease
- 尚未开始招募NCT07704294Early Prediction of Outcomes Following Optic Neuritis: Development and Acceptability of a Prognostic Tool英国
- 尚未开始招募NCT07573332A Safety and Tolerability Study of CC- 97540 (BMS-086353) in Anti-Aquaporin 4 Antibody Positive Neuromyelitis Optica Patients美国
- 尚未开始招募NCT07738952Safety and Efficacy Study of Sivelestat in Neuromyelitis Optica Spectrum Disorder
- 尚未开始招募NCT07010302Rituximab Versus Ravulizumab, Inebilizumab, Satralizumab, and Eculizumab in NMOSD德国、美国
- 尚未开始招募NCT07685678Riptylimab for the Treatment of Optic Neuritis and Myelitis Spectrum Diseases
- 尚未开始招募NCT07526298Anticipating Irreversible Disability in Neuromyelitis Optica Spectrum Disorder: a Study to Assess Disease Activity in Apparently Stable Patients意大利
- 尚未开始招募NCT07341828A Study of C-CAR168 in the Treatment of Central Nervous System Autoimmune Diseases Refractory to Standard Therapy
- 尚未开始招募NCT07273292Autonomic Dysfunction in Neuromyelitis Optica Spectrum Disorder and Multiple Sclerosis : A Comparative Study
- 尚未开始招募NCT07304960Multiple Sclerosis Versus Neuromyelitis Optica Spectrum Disorder
- 尚未开始招募NCT06561009Safety and Efficacy of BAFFR CART for Relapsed/ Refractory Neuromyelitis Optica Spectrum Disorder
- 尚未开始招募NCT07182409Efficacy and Safety of Monoclonal Antibody in Acute Phase of Neuromyelitis Optica Spectrum Disorder
外部标识与链接
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本页数据来源
- 疾病定义、同义词、基因、表型、流行病学:Orphanet(CC BY 4.0)
- 中文病名:Orphanet 中文包,冻结于 2020-06-01
- 表型中文标签:HPO 简体中文翻译(CHPO 上游成果)