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Frontiers of Medicine >> 2014, Volume 8, Issue 3 doi: 10.1007/s11684-014-0355-x

Current situation and challenge of registry in China

1. Department of Epidemiology and Biostatistics, School of Public Health, Peking University Health Science Centre, Beijing 100191, China.

2. Pfizer Investment Co., Ltd., Beijing 100010, China.

3. Department of Epidemiology, School of Public Health, Beihua University, Jilin 132001, China

Available online: 2014-10-09

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Abstract

Increasing emphasis has been placed on registries for an organized system used in developing clinical research to improve health care. China has sufficient data that can be applied broadly, but the heterogeneity and irregularity of registries limit their applicability. This article aims to describe the status of registries in China and the related challenges. Patient registries for observational studies were retrieved from the International Clinical Trials Registry to quantitatively evaluate the number of comparatively high-quality registries in China. A literature search was also performed to provide support and updates. A total of 64 patient registries were retrieved from ClinicalTrials.gov using disease, product, and health service as criteria. The sample sizes ranged from 15 to 30 400, with only 12 registries marked as completed. This article describes and compares the detailed information in many aspects. The efficient use of registries has already made considerable progress in China; however, registries still require standardization, high-quality transition, and coordinated development.

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