Psychometric data for 'A new quality of life questionnaire for use in Duchenne muscular dystrophy: the DMD-QoL'

Research data (DMDQoLPsychometric.csv) collected in an online survey of boys and men with Duchenne muscular dystrophy (DMD) in order to support the psychometric analysis and development of a new quality of life questionnaire in DMD: the DMD-QoL.<br>The research is part of the <i>Producing a preference-based quality of life measure for people with Duchenne muscular dystrophy </i>project and is funded as part of project HERCULES led by Duchenne UK.<br><br>A protocol for the work is available online: Powell et al. (2019), http://dx.doi.org/10.1136/bmjopen-2018-023685<br> All necessary approvals were acquired to use the patient reported outcome measures in this dataset. The research received ethical approval from the UK National Health Service (NHS REC reference: 18/SW/0055). <br><br>An associated data dictionary (dataDictionaryDMDQoLPsychometric.docx) is provided.

本数据集（DMDQoLPsychometric.csv）源自一项针对杜氏肌营养不良症（Duchenne muscular dystrophy, DMD）男性患者（含少年群体）的线上调研，旨在为DMD专用新版生活质量问卷DMD-QoL的编制与心理测量学分析提供数据支撑。
本研究隶属于《为杜氏肌营养不良症患者研发基于偏好的生活质量评估工具》项目，并由杜氏肌营养不良症英国协会（Duchenne UK）牵头的HERCULES项目资助。
本研究的方案已在线公开：Powell等（2019），DOI链接：http://dx.doi.org/10.1136/bmjopen-2018-023685
本数据集已完成所有必要合规审批，可使用其中收录的患者报告结局指标（Patient Reported Outcome Measures）。本研究已获得英国国家医疗服务体系伦理审查委员会（NHS REC）的伦理批准，审批编号为18/SW/0055。
本数据集附带配套数据字典（dataDictionaryDMDQoLPsychometric.docx）。