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中链酰基辅酶A脱氢酶缺乏

Medium chain acyl-CoA dehydrogenase deficiency

定义 英文原文(暂无中文)

Medium chain acyl-CoA dehydrogenase (MCAD) deficiency (MCADD) is an inborn error of mitochondrial fatty acid oxidation characterized by a rapidly progressive metabolic crisis, often presenting as hypoketotic hypoglycemia, lethargy, vomiting, seizures and coma, which can be fatal in the absence of emergency medical intervention.

别名

中链酰基辅酶a脱氢酶缺乏继发的肉碱缺乏

基本事实

遗传方式
常染色体隐性
发病年龄
婴儿期、新生儿期
患病率
1-5 / 10 000(Europe)

相关基因 1

基因名称关联类型
ACADMacyl-CoA dehydrogenase medium chainDisease-causing germline mutation(s) in

临床表型 37

常见 79–30%12

  • 肝功能下降 HP:0001410
  • 血浆总肉碱降低 HP:0011936
  • 二羧酸尿症 HP:0003215
  • 运动诱发的肌肉痛 HP:0003738
  • 疲劳性肌无力 HP:0003473
  • 颈部肌肉疲劳性无力 HP:0030199
  • 肝脏肿大 HP:0002240
  • 高氨血症 HP:0001987
  • 肌张力减退 HP:0001252
  • 近端肌肉无力 HP:0003701
  • 腱反射减低 HP:0001315
  • 呕吐 HP:0002013

偶见 29–5%25

  • 循环乳酸脱氢酶水平异常 HP:0045040
  • 心律失常 HP:0011675
  • 共济失调 HP:0001251
  • 双侧强直- 阵挛发作 HP:0002069
  • 恶病质 HP:0004326
  • 心脏扩大 HP:0001640
  • 昏迷 HP:0001259
  • 语言发育迟缓 HP:0000750
  • 腹泻 HP:0002014
  • 远端关节挛缩 HP:0005684
  • 血清肌酸磷酸激酶升高 HP:0003236
  • 循环肝转氨酶水平升高 HP:0002910
  • 尿3-羟基丁酸水平升高 HP:0040155
  • 劳力性呼吸困难 HP:0002875
  • 疲乏 HP:0012378
  • 高热惊厥(年龄在3个月至6岁之间) HP:0002373
  • 肝脂肪变性 HP:0001397
  • 低血糖 HP:0001943
  • 酮症 HP:0001946
  • 昏睡 HP:0001254
  • 意识丧失 HP:0007185
  • 巨头畸形 HP:0000256
  • 肌肉痉挛 HP:0003394
  • 肌病 HP:0003198
  • 骨骼肌萎缩 HP:0003202

近两年的全球研究 152L2

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。

  • 2026-09
    Medium-chain acyl-CoA dehydrogenase deficiency: A ten-year single-center case series from India
    Clinica chimica acta; international journal of clinical chemistry · DOI · Europe PMC
  • 2026-09综述开放获取
    Role of the Gut-Liver-Kidney Axis in Disease Manifestation and Biomarker Alterations
    International journal of molecular sciences · DOI · Europe PMC
  • 2026-09综述开放获取
    Current Status of Cellular and Gene-Based Therapies for Congenital Metabolic Disorders: A Review
    Medical science monitor : international medical journal of experimenta · DOI · Europe PMC
  • 2026-09综述开放获取
    Potential alternatives in treatment of kawasaki disease to reduce the extremely rare risk of reye syndrome
    Frontiers in pediatrics · DOI · Europe PMC
  • 2026-09开放获取
    An Optimized Diagnostic Approach for Adults With Suspected Inherited Metabolic Disorders
    Journal of inherited metabolic disease · 被引 1 · DOI · Europe PMC
  • 2026-08开放获取
    Hormonal Responses to a Short Daytime Fast in Children With Beta-Oxidation Disorders
    JIMD reports · DOI · Europe PMC
  • 2026-08开放获取
    Multiomic Investigation of Shared Genetic Pathways in Paediatric Congenital Heart Disease and Neurodevelopmental Disorders
    Human mutation · DOI · Europe PMC
  • 2026-08病例报告开放获取
    Recurrent Severe Viral-Induced Rhabdomyolysis Associated With Underlying Genetic Variants in a Young Adult: A Case Report
    Cureus · DOI · Europe PMC
  • 2026-08病例报告开放获取
    Medium-chain acyl-CoA dehydrogenase deficiency in the neonatal period: a case report Niedobór dehydrogenazy acylo-CoA średniołańcuchowych kwasów tłuszczowych w okresie noworodkowym – opis przypadku
    Pediatric endocrinology, diabetes, and metabolism
  • 2026-08开放获取
    The Spanish Uniform Newborn Screening Panel (SUSP): A National Consensus Framework for Harmonized Newborn Screening
    International journal of neonatal screening · DOI · Europe PMC
  • 2026-08开放获取
    Medium Chain Acyl-CoA Dehydrogenase Deficiency; an Unexpected Cause of Neonatal Ketoacidosis
    JIMD reports · DOI · Europe PMC
  • 2026-08开放获取
    Targeted metabolomic profiling and machine learning-based prediction models for persistent atrial fibrillation: a multi-center observational study
    PeerJ · DOI · Europe PMC
  • 2026-08
    [Screening and genetic variation analysis of fatty acid oxidation disorder in neonates in Qingdao City]
    Zhongguo dang dai er ke za zhi = Chinese journal of contemporary pedia · DOI · Europe PMC
  • 2026-07综述开放获取
    The Role of Autophagy in the Pathogenesis of Mitochondrial Diseases
    Cells · DOI · Europe PMC
  • 2026-07开放获取
    Integrating telemedicine into nutritional management of infants with inherited metabolic disorders: a pilot study
    Frontiers in pediatrics · DOI · Europe PMC
  • 2026-07开放获取
    Untargeted metabolomics reveals distinct metabolic profiles in MUT-type methylmalonic acidemia
    Molecular and cellular pediatrics · 被引 1 · DOI · Europe PMC
  • 2026-06综述开放获取
    Historical Perspectives, Classification and Diagnostic Approaches of Inborn Errors of Metabolism: A Systematic Review and Meta-Analysis
    Metabolites · DOI · Europe PMC
  • 2026-06
    Reproductive Carrier Screening Detects Early Actionable Metabolic Conditions
    Genetics in medicine : official journal of the American College of Med · DOI · Europe PMC
  • 2026-06开放获取
    Transitioning from Laboratory-Developed Tests to a Single Commercial Reagent Kit in a National Newborn Screening Program: Impact on Analytical Performance and Harmonization
    International journal of neonatal screening · DOI · Europe PMC
  • 2026-06综述开放获取
    The significance of the ketolytic gene OXCT1 in metabolism, intracellular signaling and disease development
    Cellular and molecular life sciences : CMLS · 被引 1 · 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(1 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。

  • riboflavin欧盟2023-11-08
    Treatment of medium-chain acyl-coenzyme A dehydrogenase deficiency
    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。

中国境外的在招试验 5L2

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。

美国3丹麦1

共 5 项。

  • 招募中NCT07734090
    Natural History of MADD
    观察性 · 2026/10Icahn School of Medicine at Mount Sinai
    美国
  • 招募中NCT06773026
    Study of Sodium Phenylbutyrate (ACER-001) for the Treatment of Pediatric and Adults Patients With Medium Chain Acyl-CoA Dehydrogenase Deficiency (MCADD)
    II 期 · 干预性 · 2025/06/30Jerry Vockley, MD, PhD
    美国
  • 招募中NCT06623032
    Metabolic Effects of Medium-Chain Fatty Acids in Patients With Medium-Chain Acyl-CoA Dehydrogenase Deficiency and Healthy Individuals
    不适用 · 干预性 · 2024/10/18University of Copenhagen
    丹麦
  • 招募中NCT04602325
    Systemic Biomarkers of Brain Injury From Hyperammonemia
    观察性 · 2020/07/09Children's National Research Institute
    美国
  • 可获取(拓展性用药)NCT03773770
    Expanded Access to Triheptanoin
    拓展性用药Ultragenyx Pharmaceutical Inc

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)