Management guidelines for mucopolysaccharidosis VI.

Giugliani R; Harmatz P; Wraith JE

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Management guidelines for mucopolysaccharidosis VI.

机译：粘多糖贮积病的管理指南VI。

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Mucopolysaccharidosis VI (Maroteaux-Lamy syndrome) is a lysosomal storage disease that is characterized by systemic clinical manifestations and significant functional impairment. Diagnosis and management are often challenging because of the considerable variability in symptom presentation and rate of progression. The optimal standard of care should be based on evidence from randomized, controlled trials, meta-analyses, systematic reviews, and expert opinion. In support of this goal, comprehensive management guidelines have been drafted by an international group of experts in the management of patients with mucopolysaccharidosis VI. The guidelines provide a detailed outline of disease manifestations by body system, recommendations for regular assessments, and an overview of current treatment options.

机译：粘多糖贮积病VI（Maroteaux-Lamy综合征）是一种溶酶体贮积病，其特征是全身性临床表现和明显的功能障碍。由于症状表现和进展速度存在很大差异，因此诊断和管理通常具有挑战性。最佳护理标准应基于随机，对照试验，荟萃分析，系统评价和专家意见的证据。为了实现这一目标，国际上由粘多糖贮积症VI患者管理专家组起草了全面的管理指南。该指南详细介绍了按身体系统划分的疾病表现，定期评估的建议以及当前治疗方案的概述。

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《Pediatrics: Official Publication of the American Academy of Pediatrics》 |2007年第2期|共14页
作者
Giugliani R; Harmatz P; Wraith JE;
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正文语种 eng
中图分类儿科学;
关键词
Mucopolysaccharidosis VI; guiding characteristics; Management; overview; 粘多糖累积病Ⅵ型;

机译：Mucopolysaccharidosis VI;guiding characteristics;Management;overview;粘多糖累积病Ⅵ型;

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机译：粘多糖贮积病的管理指南VI。
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5. A water resources management strategy for surface and groundwater in Osage County, Oklahoma utilized to formulate policy guidelines for water rights and resources protection and management for Indian lands. [D] . Shields, Richard H., Jr. 1993

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6. Enzyme replacement therapy from birth in a feline model of mucopolysaccharidosis type VI. [O] . A C Crawley, K H Niedzielski, E L Isaac, 1997

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7. ACC/AHA/ESC guidelines for the management of patients with atrial fibrillation31This document was approved by the American College of Cardiology Board of Trustees in August 2001, the American Heart Association Science Advisory and Coordinating Committee in August 2001, and the European Society of Cardiology Board and Committee for Practice Guidelines and Policy Conferences in August 2001.32When citing this document, the American College of Cardiology, the American Heart Association, and the European Society of Cardiology would appreciate the following citation format: Fuster V, Rydén LE, Asinger RW, Cannom DS, Crijns HJ, Frye RL, Halperin JL, Kay GN, Klein WW, Lévy S, McNamara RL, Prystowsky EN, Wann LS, Wyse DG. ACC/AHA/ESC guidelines for the management of patients with atrial fibrillation: a report of the American College of Cardiology/American Heart Association Task Force on Practice Guidelines and the European Society of Cardiology Committee for Practice Guidelines and Policy Conferences (Committee to Develop Guidelines for the Management of Patients With Atrial Fibrillation). J Am Coll Cardiol 2001;38:XX-XX.33This document is available on the World Wide Web sites of the American College of Cardiology (www.acc.org), the American Heart Association (www.americanheart.org), the European Society of Cardiology (www.escardio.org), and the North American Society of Pacing and Electrophysiology (www.naspe.org). Single reprints of this document (the complete Guidelines) to be published in the mid-October issue of the European Heart Journal are available by calling +44.207.424.4200 or +44.207.424.4389, faxing +44.207.424.4433, or writing Harcourt Publishers Ltd, European Heart Journal, ESC Guidelines – Reprints, 32 Jamestown Road, London, NW1 7BY, United Kingdom. Single reprints of the shorter version (Executive Summary and Summary of Recommendations) published in the October issue of the Journal of the American College of Cardiology and the October issue of Circulation, are available for $5.00 each by calling 800-253-4636 (US only) or by writing the Resource Center, American College of Cardiology, 9111 Old Georgetown Road, Bethesda, Maryland 20814. To purchase bulk reprints specify version and reprint number (Executive Summary 71-0208; full text 71-0209) up to 999 copies, call 800-611-6083 (US only) or fax 413-665-2671; 1000 or more copies, call 214-706-1466, fax 214-691-6342; or E-mail: pubauth@heart.org. A report of the American College of Cardiology/American Heart Association Task Force on Practice Guidelines and the European Society of Cardiology Committee for Practice Guidelines and Policy Conferences (Committee to Develop Guidelines for the Management of Patients With Atrial Fibrillation) Developed in Collaboration With the North American Society of Pacing and Electrophysiology [O] . Fuster Valentin, Rydén Lars E., Asinger Richard W., 2001

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Management guidelines for mucopolysaccharidosis VI.

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