肝豆状核变性
Wilson disease
定义 英文原文(暂无中文)
A rare genetic disorder of copper metabolism presenting with non-specific hepatic, neurologic, psychiatric or ophthalmologic manifestations due to impaired biliary copper excretion and consecutive excessive copper deposition in the body.
别名
肝豆状核变性
基本事实
- 遗传方式
- 常染色体隐性
- 发病年龄
- 青少年期、成年期、儿童期、老年期
- 患病率
- 1-9 / 100 000
相关基因 1
| 基因 | 名称 | 关联类型 |
|---|---|---|
| ATP7B | ATPase copper transporting beta | Disease-causing germline mutation(s) (loss of function) in |
临床表型 57
极常见 99–80%33
- 手异常 HP:0001155
- 月经周期异常 HP:0000140
- 急性肝功能衰竭 HP:0006554
- 急性肝炎 HP:0200119
- 攻击性行为 HP:0000718
- 性行为增多 HP:5200321
- 贫血 HP:0001903
- 关节疼痛 HP:0002829
- 关节炎 HP:0001369
- 背部疼痛 HP:0003418
- 骨痛 HP:0002653
- 瘀斑易感性 HP:0000978
- 肝硬化 HP:0001394
- 笨拙 HP:0002312
- 抑郁 HP:0000716
- 构音障碍 HP:0001260
- 循环肝转氨酶水平升高 HP:0002910
- 发育迟滞 HP:0001508
- 步态异常 HP:0001288
- 肝脂肪变性 HP:0001397
- 肝炎 HP:0012115
- 肝脏肿大 HP:0002240
- 体重增加 HP:0004324
- 智力障碍 HP:0001249
- 黄疸 HP:0000952
- 关节肿胀 HP:0001386
- 角膜色素环 HP:0200032
- 病理性骨折 HP:0002756
- 下肢近端肌无力 HP:0008994
- 瘙痒 HP:0000989
- 脾肿大 HP:0001744
- 血小板减少症 HP:0001873
- 体重减轻 HP:0001824
常见 79–30%8
- 舞蹈样运动 HP:0002072
- 血清铜蓝蛋白降低 HP:0010837
- 肌张力障碍 HP:0001332
- 步态异常 HP:0001288
- 溶血性贫血 HP:0001878
- 骨质疏松 HP:0000939
- 性格改变 HP:0000751
- 震颤 HP:0001337
偶见 29–5%15
- 腹痛 HP:0002027
- 氨基酸尿 HP:0003355
- 焦虑 HP:0000739
- 腹水 HP:0001541
- 唾液分泌过多 HP:0003781
- 脑干局灶性T2高信号病变 HP:0012748
- 幻觉 HP:0000738
- 甲状旁腺功能减退症 HP:0000829
- 不孕症/不育症 HP:0000789
- 失眠 HP:0100785
- 肾结石 HP:0000787
- 胰腺炎 HP:0001733
- 精神病 HP:0000709
- 癫痫发作 HP:0001250
- 呕吐 HP:0002013
罕见 <4–1%1
- 向日葵样白内障 HP:6000642
近两年的全球研究 1,834L2
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。
- 2026-11开放获取Essential Oral Single Nutritional Therapy Products for Inherited Metabolic Diseases: Evidence and Consensus Assessment Using a Modified Delphi Method
- 2026-10Correction: CRISPR/Cas9-mediated gene correction of Wilson disease H1069Q point mutation in patient-specific induced pluripotent stem cells
- 2026-10Genome-wide transcriptomics and a machine learning-based random forest model identify novel biomarkers to predict phenotypic variability in Wilson disease
- 2026-10Eriocitrin Attenuates Diabetic Cardiomyopathy by Regulating Copper Homeostasis and Cuproptosis-Associated Pathways via SIRT7/YAP/ATP7A Signalling
- 2026-10Analysis of end-stage renal disease mediated by cuproptosis-related genes
- 2026-09开放获取Restoring brain functions in the Mo-blo mouse model of Menkes disease with copper nanoclusters
- 2026-09开放获取Bio-Memristor Based on Clinical Bile Samples: A Proof-of-Concept Pilot Study for Detection of Gallbladder Cancer
- 2026-09开放获取Copper-Driven Epithelial Barrier Disruption: A Novel Mechanism of COPD Acute Exacerbations Mediated by the TNF-α/ATP7A Axis
- 2026-09Disrupted copper homeostasis promotes osteopontin-mediated hepatocyte-stellate cell crosstalk in Wilson disease
- 2026-09综述开放获取Cuproptosis and ferroptosis: signal pathways, diseases and therapeutic targets
- 2026-09digitalMLPA EZtec-MS: A new highly multiplexed DNA probe-based technique for neonatal screening
- 2026-09病例报告开放获取Fragile X-associated tremor/ataxia syndrome with autoimmune hepatitis requiring liver transplantation
- 2026-09开放获取Neutrophil extracellular traps delivering lactylated S100a9 aggravate neuronal cuproptosis by regulating Ttr/Commd1/Atp7b axis after traumatic brain injury
- 2026-09开放获取Effects of Dietary Copper on Growth Performance, Antioxidant Capacity, Muscle Quality and the Expression of Copper-Transport and Muscle Development-Related Genes in Juvenile Red Swamp Crayfish (<i>Procambarus clarkii</i>)
- 2026-09开放获取Genetic testing and exchangeable copper can improve the accuracy of Wilson disease diagnoses
- 2026-09开放获取The Childhood Liver Disease Research Network's prospective characterization of pediatric primary sclerosing cholangitis
- 2026-09Functional analysis of the methanobactin-encoding gene cluster of <i>Methylocystis</i> sp. strain SB2
- 2026-09开放获取SOX2 Inhibits Cuproptosis to Affect Cisplatin Resistance in Non-Small Cell Lung Cancer by Activating the Wnt/ATP7B Signaling Pathway
- 2026-09Therapeutic Management of Wilson Disease in Clinical Practice: Multicenter Retrospective Real-World Data from Germany
- 2026-09荟萃分析开放获取Conserved hepatic RNA signatures across multiple cohorts reveal novel mechanistic clues for advanced fibrosis in human MASLD
境外已获批用于本病的药物 3L2
欧盟 3 项、美国 0 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。
- Wilzin欧盟2004-10-12zinc官方记录
- Cuprior欧盟2017-09-05trientine官方记录
- Cufence欧盟2019-07-25trientine dihydrochloride官方记录
尚未获批的在研药物(2 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。
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 16L2
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 10
- 招募中NCT04965558Clinical Features and Outcome in Patients With Osseomuscular Type of Wilson's Disease中国研究中心 1 个:Hangzhou
- 招募中NCT04965545Role for Biochemical Assays and Kayser-Fleischer Rings in Diagnosis of Wilson Disease中国研究中心 1 个:Hangzhou
- 招募中NCT03131427China Registry for Genetic / Metabolic Liver Diseases中国研究中心 12 个:Beijing、Chengdu、Guangzhou、Shanghai、Shijiazhuang、Tianjin 等 8 地
- 招募中NCT04012658A Registered Cohort Study on Wilson's Disease中国研究中心 1 个:Fuzhou
- 尚未开始招募NCT06196931Clinical Value of DWI-ADC Matching in the Short-term Prognosis of Wilson's Disease中国研究中心 1 个:Hefei
- 招募中NCT06650319A Clinical Study to Evaluate the Safety and Efficacy of LY-M003 Injection in Patients With Wilson Disease中国研究中心 1 个:Hangzhou
- 尚未开始招募NCT07173933Phase I/II Clinical Study to Evaluate the Safety, Tolerability, and Efficacy of GC310 Injection in Patients With Wilson's Disease (WD)中国研究中心 1 个:Beijing
- 招募中NCT07240896A Clinical Study on the Treatment of Wilson Disease With ATP7B mRNA/LNP (DSL101)中国研究中心 1 个:Hefei
- 尚未开始招募NCT07641140Phase I/II Clinical Study to Evaluate the Safety, Tolerability and Efficacy of LY-M003 Injection in Adult Patients With Wilson's Disease中国研究中心 1 个:Hangzhou
- 尚未开始招募NCT07465718Trientine Tetrahydrochloride Administered Once a Day for the First Line Treatment of Wilson's Disease Patients.中国研究中心 3 个:Beijing、Hangzhou
其他状态的试验(6 项)
- 已完成NCT04965571Clinical Features and Outcome of Wilson's Disease With Generalized Epilepsy in Chinese Patients中国研究中心 1 个:Hangzhou
- 已完成NCT06762509The Clinical Study of Botulinum Toxin Type A Injection in the Treatment of Wilson Disease中国研究中心 1 个:Hefei
- 状态未知NCT03589820Plasma Exchange and Continuous Hemodiafiltration in Treatment of Wilson's Disease-related Liver Failure中国研究中心 1 个:Guangzhou
- 状态未知NCT03957720The Individual Therapy for Patients With Wilson's Disease中国研究中心 1 个:Hangzhou
- 状态未知NCT05305872Gandouling in the Treatment of Wilson's Disease中国研究中心 1 个:Hefei
- 进行中·不再招募NCT06663878An Exploratory Study to Evaluate the Tolerability and Safety of MWAV201 in Subjects With Wilson Disease中国研究中心 1 个:Shanghai
中国境外的在招试验 29L2
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 29 项,此处取回并展示最近的 15 项。
- 招募中NCT07748403A Study of the Safety and Efficacy of Prime Editing (PM577) in Participants With Wilson Disease (WD)新西兰、美国
- 尚未开始招募NCT07208565Endocrine Dysfunction in Pediatric Wilson's Disease
- 尚未开始招募NCT07476417Oral Health, Dento-facial Condition and OHRQoL in Subjects With Mowat-Wilson Syndrome: an Epidemiologic Study.意大利
- 尚未开始招募NCT07075393Description of Renal Involvement in Wilson's Disease法国
- 招募中NCT07301216Off Treatment Urinary Copper Excretion in Wilson Disease, Pilot Study美国
- 尚未开始招募NCT07241832Multifaceted Assessment of Patients With Wilson's Disease in a Low-Resource Setting in Upper Egypt: Service Integration, Psychosocial Burden, Dietary Practices, and the Geo-Spatial Disease Map
- 招募中NCT06945081Wilson's Disease Treated With D-Penicillamine: Characterization of Skin Damage Secondary to Treatment by Measuring Skin Elasticity法国
- 招募中NCT06430359Circadian Variation of Urinary Copper Excretion in Wilson Disease Patients法国
- 尚未开始招募NCT06698991Daily Versus Alternate Day Plasma Exchange in Wilson Disease With Acute Liver Failure in Children印度
- 招募中NCT06573723Institutional Registry of Rare Diseases阿根廷
- 尚未开始招募NCT06051734Early Detection of Cardiac Affection in Patients of Wilson's Disease
- 招募中NCT05444127Oral Health and Wilson's Disease: SOMAWI法国
- 招募中NCT05493605Cardiac Involvement in Wilson's Disease法国
- 招募中NCT05239858International Wilson's Disease Patient Registry (iWilson Registry)比利时、法国、德国、波兰、沙特阿拉伯、西班牙、英国
- 招募中NCT05183165Description of the Copper Concentration in Breast Milk in Women Treated for Wilson's Disease法国
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)