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围产期遗传性出血性疾病诊断与管理中的未解决问题:美国国家血友病基金会医学与科学咨询委员会围产期特别工作组白皮书

Unresolved issues in diagnosis and management of inherited bleeding disorders in the perinatal period: a White Paper of the Perinatal Task Force of the Medical and Scientific Advisory Council of the National Hemophilia Foundation, USA.

作者信息

Kulkarni R, Ponder K P, James A H, Soucie J M, Koerper M, Hoots W K, Lusher J M

机构信息

Department of Pediatrics and Human Development, Michigan State University, East Lansing, MI 48824, USA.

出版信息

Haemophilia. 2006 May;12(3):205-11. doi: 10.1111/j.1365-2516.2006.01277.x.

Abstract

Haemophilia and inherited bleeding disorders in newborns and their carrier mothers pose unique challenges. The pattern of bleeding and the causes and risk factors for bleeding are decidedly different than an older child or an adult with haemophilia/inherited bleeding disorder. This document outlines the needs for further research and education, summarizes the state of the art background information and provides guidance regarding research, education and access to care issues in this population.

摘要

新生儿血友病及遗传性出血性疾病与其携带者母亲带来了独特的挑战。出血模式以及出血的原因和风险因素与年龄较大的血友病/遗传性出血性疾病患儿或成人明显不同。本文概述了进一步研究和教育的需求,总结了最新的背景信息,并就该人群的研究、教育及医疗服务获取问题提供指导。

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