Analysis of the current status of patient registry studies in China

YI Hongbin; NIE Zhifeng; HAN Sheng; SHI Luwen

doi:10.12173/j.issn.1004-5511.202412151

Abstract：Objective To analyze the current status of patient registry studies conducted in China,and to provide reference basis for improvement of patient registry studies.Methods Patient registry studies in China were searched in ClinicalTrials.gov,and the time limit for searching was from the establishment of the database to June 2024.The descriptive analyses was carried out to evaluate the situation,the scale,the main disease of the sponsors and funders of patient registry studies in China.Results As of June 2024,there were a total of 1,565 patient registry studies in China registered on ClinicalTrials.gov.The results showed that the sponsors of patient registry studies in China were mainly hospitals,universities and other institutions,of which the Peking Union Medical College Hospital had the largest number of sponsors(64,4.09％).A total of 1,441 patient registry studies in China were funded by"other",accounting for 92.08％.Most of the patient registry studies were under the process of recruitment(565,36.10％).Most of the patient registry studies had 100～999 enrolled cases(713,45.56％).The main disease area involved were cancer(186,11.88％),stroke(81,5.18％)and heart disease(53,3.39％).Conclusion Patient registry studies in China are developing well,gradually increasing in number,covering a wide range of disease areas,with active participation of hospitals and universities.However,there are still problems and challenges such as insufficient management and transparency,limited scale of research,and single source of funding.