Department of Infectious Diseases 8632, University Hospital of Copenhagen, Copenhagen, Denmark.
Copenhagen Cystic Fibrosis Center, Department of Infectious Diseases, University Hospital of Copenhagen, Copenhagen, Denmark.
Respir Res. 2017 May 30;18(1):108. doi: 10.1186/s12931-017-0592-z.
Patient reported outcomes (PROs) have become widely accepted outcome measures in cystic fibrosis (CF) and other respiratory diseases. The Cystic Fibrosis-Questionnaire-Revised (CFQ-R) is the best validated and most widely used PRO for CF. Data collection can be time-intensive, and electronic platforms would greatly facilitate the feasibility, utility and accuracy of administration of the CFQ-R. Given that the CFQ-R is utilized in virtually all clinical trials worldwide and is increasingly integrated into clinical practice, we developed a software application that will help users to administer, score and save CFQ-R data for all versions. All codes are open access, which will enable other PRO users to design similar applications for other respiratory diseases, such as primary ciliary dyskinesia and non-CF bronchiectasis.
患者报告结局（PROs）已在囊性纤维化（CF）和其他呼吸系统疾病中广泛被接受为结局测量指标。囊性纤维化调查问卷修订版（CFQ-R）是 CF 中经过最佳验证和使用最广泛的 PRO。数据收集可能非常耗时，如果使用电子平台将会极大地提高 CFQ-R 管理的可行性、实用性和准确性。鉴于 CFQ-R 在全球几乎所有临床试验中都得到了使用，并且越来越多地融入临床实践，我们开发了一个软件应用程序，该程序将帮助用户管理、评分和保存所有版本的 CFQ-R 数据。所有代码都可以公开访问，这将使其他 PRO 用户能够为其他呼吸系统疾病（如原发性纤毛运动障碍和非 CF 支气管扩张症）设计类似的应用程序。
