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Marfan syndrome

定义 英文原文(暂无中文)

Marfan syndrome is a systemic disease of connective tissue characterized by a variable combination of cardiovascular, musculo-skeletal, ophthalmic and pulmonary manifestations.

别名

MFS

基本事实

遗传方式
常染色体显性
发病年龄
各年龄段
患病率
1-5 / 10 000(Europe)

相关基因 1来自下位疾病

Orphanet 未在本条目上直接标注致病基因。下表由本组所属的下位疾病汇总而来,「来源条目」列给出基因实际标注在哪一个 ORPHA 条目上。

基因名称来源条目
FBN1fibrillin 1ORPHA:284979

临床表型 68

极常见 99–80%10

  • 主动脉瘤 HP:0004942
  • 主动脉根部瘤 HP:0002616
  • 细长指(趾) HP:0001166
  • 慢性疲劳 HP:0012432
  • 不成比例的高身材 HP:0001519
  • 鸡胸 HP:0000768
  • 扁平足 HP:0001763
  • 修长的身材 HP:0001533
  • 自发性气胸 HP:0002108
  • 萎缩纹 HP:0001065

常见 79–30%24

  • 颧骨形态异常 HP:0010668
  • 主动脉夹层 HP:0002647
  • 主动脉瓣反流 HP:0001659
  • 关节痛/关节炎 HP:0005059
  • 生主动脉动脉瘤 HP:0004970
  • 牙列拥挤 HP:0000678
  • 硬膜扩张 HP:0100775
  • 晶状体异位 HP:0001083
  • 腭高而窄 HP:0002705
  • 眼球轴长度增加 HP:0007800
  • 关节过度活动 HP:0001382
  • 晶状体脱位 HP:0012019
  • 晶状体半脱位 HP:0001132
  • 二尖瓣反流 HP:0001653
  • 二尖瓣脱垂 HP:0001634
  • 近视 HP:0000545
  • 脸狭窄 HP:0000275
  • 漏斗胸 HP:0000767
  • 髋臼内陷 HP:0003179
  • 脊柱侧弯 HP:0002650
  • 睡眠异常 HP:0002360
  • 睡眠呼吸暂停 HP:0010535
  • 三尖瓣脱垂 HP:0001704
  • 视觉障碍 HP:0000505

偶见 29–5%34

  • 左心室功能异常 HP:0005162
  • 主动脉迂曲 HP:0006687
  • 动脉夹层 HP:0005294
  • 注意力缺陷多动障碍 HP:0007018
  • 恶病质 HP:0004326
  • 腭裂 HP:0000175
  • 充血性心力衰竭 HP:0001635
  • 腹部动脉扩张 HP:0002636
  • 长头畸形 HP:0000268
  • 下斜睑裂 HP:0000494
  • 气肿 HP:0002097
  • 扁平角膜 HP:0007720
  • 青光眼 HP:0000501
  • 咯血 HP:0002105
  • 虹膜发育不全 HP:0007676
  • 肌张力减退 HP:0001252
  • 腹股沟疝 HP:0000023
  • 失眠 HP:0100785
  • 脊柱后凸畸形(驼背) HP:0002808
  • 肘运动受限 HP:0002996
  • 脑脊膜膨出 HP:0002435
  • 小下颌 HP:0000347
  • 二尖瓣钙化 HP:0004382
  • 肌痛 HP:0003326
  • 开牙合 HP:0010807
  • 骨质减少 HP:0000938
  • 骨质疏松 HP:0000939
  • 肺动脉扩张 HP:0004927
  • 骨密度降低 HP:0004349
  • 视网膜脱离 HP:0000541
  • 下颌后缩 HP:0000278
  • 骨骼肌萎缩 HP:0003202
  • 脊椎滑脱症 HP:0003302
  • 室性心动过速 HP:0004756

近两年的全球研究 2,809L2

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
    Allopurinol for Marfan Aortopathy: Pharmacogenomic Safety and Sex-Stratified Trial Design Warrant Consideration
    Cardiovascular drugs and therapy · DOI · Europe PMC
  • 2026-10
    Ventricular Arrhythmias in Marfan Syndrome: Prevalence and Clinical Correlates in a Multicenter Cohort
    Circulation. Arrhythmia and electrophysiology · DOI · Europe PMC
  • 2026-10
    Selective Endovascular Aortic Repair in Connective Tissue Disease Patients Within a Multidisciplinary Program Achieves Comparable Outcomes in High-Risk Patients
    Journal of vascular surgery · DOI · Europe PMC
  • 2026-10
    Decision-Making in IVF: Restrictions on PGT-M Positive Embryo Transfers-A Qualitative Study
    Journal of genetic counseling · DOI · Europe PMC
  • 2026-09
    Molecular heterogeneity and diagnostic performance of phenotype-driven multigene panel testing in patients with marfanoid habitus
    Journal of applied genetics · DOI · Europe PMC
  • 2026-09开放获取
    SCTS Annual Meeting 2025: Abstracts
    Journal of cardiothoracic surgery · DOI · Europe PMC
  • 2026-09
    Accuracy of intraocular lens power calculation in pediatric aphakia with the Artisan iris-claw lens
    Graefe's archive for clinical and experimental ophthalmology = Albrech · DOI · Europe PMC
  • 2026-09开放获取
    Health-related quality of life, psychological well-being and physical activity in patients with mild-to-moderate ascending aortic dilation - a cross-sectional case-control study
    BMC cardiovascular disorders · DOI · Europe PMC
  • 2026-09综述开放获取
    Standardizing the Yamane flanged intrascleral haptic fixation: A framework for efficacy, complication mitigation, and reproducible training
    World journal of methodology · DOI · Europe PMC
  • 2026-09综述病例报告开放获取
    Tangier Disease
    Current atherosclerosis reports · DOI · Europe PMC
  • 2026-09
    Exome-wide screening discovers novel pathogenic variants in Vietnamese primary congenital glaucoma patients
    Genes & genomics · DOI · Europe PMC
  • 2026-09综述开放获取
    Congenital Chest Wall Deformities in Children: A Narrative Review
    Children (Basel, Switzerland) · DOI · Europe PMC
  • 2026-09综述
    Introducing Allopurinol to the Medical Treatment of Marfan Syndrome: Advantages, Limitations, and Potential Extension to other Aortopathies
    Cardiovascular drugs and therapy · DOI · Europe PMC
  • 2026-09综述开放获取
    Smooth Muscle Cell Plasticity as a Central Determinant of Plaque Stability
    Current atherosclerosis reports · DOI · Europe PMC
  • 2026-09
    Cautionary Data on Antihypertensives in Aortic Diseases
    Hypertension (Dallas, Tex. : 1979) · DOI · Europe PMC
  • 2026-09开放获取
    ADAR1 and ADAR2 Expression in the Thoracic Aortic Wall Correlates with Aneurysm Severity and Dissection Risk: Insights into A-to-I RNA Editing Dysregulation in Marfan Syndrome-Derived vSMCs
    International journal of molecular sciences · DOI · Europe PMC
  • 2026-09病例报告开放获取
    Light Adjustable Lens (LAL) using Yamane intrascleral flanged fixation for traumatic aphakia: A case report
    American journal of ophthalmology case reports
  • 2026-09
    TRPV4 is Associated with a Marfan Syndrome-Related Mechanosensitive Gene Program in Aortic Smooth Muscle Cells
    Biochemical genetics · DOI · Europe PMC
  • 2026-09综述
    FBN1-related connective tissue disorders: unraveling cardiovascular, skeletal, and ocular complications through TGF-β signaling dysregulation and genotypic correlations
    Molecular aspects of medicine · DOI · Europe PMC
  • 2026-09开放获取
    Rare diseases in Brazil: a nationwide analysis of the diagnostic odyssey
    Journal of community genetics · DOI · Europe PMC

境外已获批用于本病的药物 0L2

欧盟与美国均未检索到已获批用于本病的药物。

尚未获批的在研药物(3 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。

  • allopurinol欧盟2025-03-25
    Treatment of Marfan syndrome
    官方记录
  • losartan美国2011-12-12
    Treatment of Marfan Syndrome
    官方记录
  • enzastaurin美国2025-04-14
    treatment of Marfan syndrome
    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 3L2

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 1

  • 招募中NCT07672210
    PregnAncy-Related Aortic DISsEction in China
    观察性 · 2026/03/17DeltaHealth Hospital · Shanghai
    中国研究中心 4 个:Beijing、Guangzhou、Shanghai、Wuhan
其他状态的试验(2 项)
  • 状态未知NCT05578469
    Surgical Treatment of Marfan Syndrome With Subluxation Lens
    观察性 · 2016/01/01Second Affiliated Hospital, Zhejiang University, School of Medicine
    中国研究中心 1 个:Hangzhou
  • 已完成NCT07008274
    Laparoscopic Sleeve Gastrectomy-Induced Decline in Plasma Asprosin and Its Association With Metabolic Recovery
    观察性 · 2021/01/01Northern Jiangsu People's Hospital
    中国研究中心 1 个:Yangzhou

中国境外的在招试验 19L2

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。

意大利3法国3土耳其2美国2波兰1西班牙1巴西1

CT.gov 报告命中 19 项,此处取回并展示最近的 15 项。

  • 尚未开始招募NCT07793747
    Serum Asprosin, Metabolic Syndrome, and Cardiometabolic Risk in Rheumatoid Arthritis
    观察性 · 2026/10Assiut University
  • 尚未开始招募NCT07803198
    Asprosin in Behect Patients
    观察性 · 2026/09/01Assiut University
  • 尚未开始招募NCT07358533
    Metabolic Obesity in Normal Weight (MONW): Diagnostic Markers Stud
    观察性 · 2026/09Pomeranian Medical University Szczecin
    波兰
  • 尚未开始招募NCT07591844
    Effect of Periodontal Therapy on Asprosin in Stable Angina
    不适用 · 干预性 · 2026/05/20Ondokuz Mayıs University
    土耳其
  • 尚未开始招募NCT07495267
    Nutritional Ketosis Marfan
    不适用 · 干预性 · 2026/03/13Washington University School of Medicine
  • 尚未开始招募NCT07419386
    Clinical and Psychosocial Factors Associated With Physical Activity Level in Adults With Marfan Syndrome
    观察性 · 2026/02/22University of Oviedo
    西班牙
  • 尚未开始招募NCT07169669
    Multicentre Longitudinal Study of Bone Mineralisation Characteristics in Marfan Syndrome and Ehlers-Danlos Syndrome
    观察性 · 2025/10/31IRCCS Policlinico S. Donato
  • 招募中NCT06546137
    National Network for Cardiovascular Genomics: Advancing Cardiovascular Healthcare for Hereditary Diseases in Brazil's Unified Health System Through a Multicenter Registry
    观察性 · 2025/04/30Hospital do Coracao
    巴西
  • 尚未开始招募NCT06735313
    Changes in Salivary Asprosin, IL-39, IL-40 and IL-1β Levels in Diabetic Patients with Periodontitis
    不适用 · 干预性 · 2025/01/10Necmettin Erbakan University
    土耳其
  • 尚未开始招募NCT06592560
    Asprosin in Breast Cancer
    观察性 · 2024/10Marina Hanna Thabet Ghobrial
  • 招募中NCT06782230
    ScATtEred Rare Disease Biobanks: a Model of Sample/Data Collection With susTainablE and Shared Criteria
    观察性 · 2024/08/31IRCCS Policlinico S. Donato
    意大利
  • 招募中NCT06720883
    Robotically Assisted Surgery For Perihilar Cholangiocarcinoma: A Prospective Study
    观察性 · 2024/06/07Azienda Ospedaliera di Padova
    意大利
  • 招募中NCT05809323
    Marfan Syndrome Moderate Exercise Trial II
    不适用 · 干预性 · 2023/09/01Baylor College of Medicine
    美国
  • 招募中NCT05838235
    Adapted Physical Activity Program (APA) for Effort Rehabilitation of Children and Teenagers With Marfan Syndrome
    不适用 · 干预性 · 2023/04/24University Hospital, Toulouse
    法国
  • 招募中NCT05702476
    Marfan Syndrome (MFS) and Facial Dysmorphism: Non-invasive 3D Assessment
    观察性 · 2023/01/09IRCCS Policlinico S. Donato
    意大利

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)