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I型、II型和VI型黏多糖贮积症及酶替代疗法的反应:一项单中心病例系列研究的结果

Mucopolysaccharidosis type I, II and VI and response to enzyme replacement therapy: Results from a single-center case series study.

作者信息

Franco José Francisco da Silva, El Dib Regina, Agarwal Arnav, Soares Diogo, Milhan Noala Vicensoto Moreira, Albano Lilian Maria José, Kim Chong Ae

机构信息

Pediatric Department, Catholic University - PUC, Campinas, Brazil.

Nuclear and Energy Research Institute (IPEN/USP), Sao Paulo, SP, Brazil.

出版信息

Intractable Rare Dis Res. 2017 Aug;6(3):183-190. doi: 10.5582/irdr.2017.01036.

Abstract

Mucopolysaccharidoses (MPS) types I, II and VI are associated with deficiencies in alpha-L-iduronidase, iduronate-2-sulfatase and N-acetylgalactosamine-4-sulfatase, respectively, and generally involve progressive and multi-systemic clinical manifestations. Enzyme replacement therapy (ERT) appears to be reasonably well tolerated. The aim of this study was to examine clinical and diagnostic findings of a series of pediatric and adult MPS patients, and assess the safety and efficacy of ERT in children and adults with MPS type I, II and VI. Pediatric and adult patients were treated weekly with 1 mg/kg recombinant human N-acetylgalactosamine-4-sulphatase (rhASB), 0.45 mg/kg alpha-L-iduronidase, or 0.5 mg/kg iduronate-2-sulfatase. Clinical and biochemical parameters with ERT were evaluated for a mean duration of 5 years. Mantel-Haenszel risk ratios and associated 95% confidence intervals (CIs) were calculated for rates of death among different types of enzyme replacement therapies (ERTs). Twenty-seven patients (mean ages ‒ pediatric: 6.8 years; adult: 29 years) were included. ERT was found to be consistently well tolerated and effective in attenuating symptoms, but did not prevent the progression of the disease or reduce mortality rates. Our findings demonstrated that early diagnosis and initiation of ERT are critical for improvements in patient-important outcomes and quality of life, although disease progression and mortality rates remain high.

摘要

黏多糖贮积症(MPS)I型、II型和VI型分别与α-L-艾杜糖醛酸酶、艾杜糖醛酸-2-硫酸酯酶和N-乙酰半乳糖胺-4-硫酸酯酶缺乏相关,通常伴有进行性多系统临床表现。酶替代疗法(ERT)似乎耐受性良好。本研究的目的是检查一系列儿童和成人MPS患者的临床和诊断结果,并评估ERT对I型、II型和VI型MPS儿童和成人的安全性和有效性。儿童和成人患者每周接受1mg/kg重组人N-乙酰半乳糖胺-4-硫酸酯酶(rhASB)、0.45mg/kgα-L-艾杜糖醛酸酶或0.5mg/kg艾杜糖醛酸-2-硫酸酯酶治疗。对接受ERT治疗的临床和生化参数进行了平均5年的评估。计算了不同类型酶替代疗法(ERT)的死亡发生率的Mantel-Haenszel风险比及相关的95%置信区间(CI)。纳入了27例患者(平均年龄——儿童:6.8岁;成人:29岁)。发现ERT耐受性始终良好,且在减轻症状方面有效,但不能阻止疾病进展或降低死亡率。我们的研究结果表明,尽管疾病进展和死亡率仍然很高,但早期诊断和开始ERT对于改善对患者重要的结局和生活质量至关重要。

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