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杜兴氏肌营养不良症关联注册报告。

DuchenneConnect Registry Report.

作者信息

Rangel Vanessa, Martin Ann S, Peay Holly L

机构信息

VP Genetic Services, PatientCrossroads; DuchenneConnect Coordinator, Parent Project Muscular Dystrophy and Senior Director, Parent Project Muscular Dystrophy.

出版信息

PLoS Curr. 2012 Feb 29;4:RRN1309. doi: 10.1371/currents.RRN1309.

DOI:10.1371/currents.RRN1309
PMID:22453902
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC3299489/
Abstract

Research activity in Duchenne/Becker muscular dystrophy has surged in recent years, requiring robust information networks to support ongoing development. Established by Parent Project Muscular Dystrophy in late 2007, DuchenneConnect was created to bridge the information gap between care providers, researchers and the patient community, thereby addressing medical care needs and accelerating the pace of therapeutic advancements. This report represents the first in a new series that will be regularly shared by DuchenneConnect and PPMD. Data in this report was collected through June 2011.

摘要

近年来，杜兴氏/贝克氏肌肉萎缩症的研究活动激增，这需要强大的信息网络来支持正在进行的研究。杜兴氏连接（DuchenneConnect）由肌肉萎缩症家长项目（Parent Project Muscular Dystrophy）于2007年末设立，旨在弥合医疗服务提供者、研究人员和患者群体之间的信息差距，从而满足医疗需求并加快治疗进展的步伐。本报告是杜兴氏连接和肌肉萎缩症家长项目将定期分享的新系列报告中的第一篇。本报告中的数据收集截至2011年6月。

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https://cdn.ncbi.nlm.nih.gov/pmc/blobs/099d/3309559/da8851752f90/table-2.jpg
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