A patient registry database is an important source of real-world data, and has been widely used in the assessment of drug and medical devices, as well as disease management. As the second part of the serial technical guidance for real-world data and studies, this paper introduces the concept and scope of potential uses of patient registry databases, proposes recommendations for planning and developing a patient registry database, and compares existing health and medical databases. This paper further develops essential quality indicators for developing a patient registry database, in expect to guide future studies.
Citation: TAN Jing, PENG Xiaoxia, SHU Xiaochen, WANG Li, LI Guowei, ZHANG Ling, MAO Chen, GUO Xinfeng, SUN Xin, On behalf of China REal world data and studies ALliance (ChinaREAL). Technical guidance for developing patient registry databases. Chinese Journal of Evidence-Based Medicine, 2019, 19(7): 771-778. doi: 10.7507/1672-2531.201904161 Copy
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