239MO - NUWA Project: the first national real-world gynecological oncology research and patient management platform in China

Background

We aimed to develop a high-quality real-world clinico-genomic gynecological oncology database in China for real-world evidence generation and better patient management.

Methods

NUWA project is the first nationwide gynecological oncology (GO) data-sharing platform that launched by the National Clinical Research Center for Obstetrics and Gynecology in China. The project started in August 2019 and aimed to link and integrate inpatient/outpatient clinical data, genomic data, as well as out-of-hospital follow-up data (e.g. LinkDoc call center) for developing a patient (pt)-level longitudinal clinico-genomic database in a HIPAA-compliant manner. The de-identified structured and unstructured data were extracted from electronic medical records (EMR) or other data sources (third-party genetic-testing company databases) via technology-aided manual abstraction. Rigorous data consistency check was performed daily by duplicate manual review to ensure the accuracy of data entry. The multi-source data were then linked and aggregated using a unique ID. Medical review for pt-level data was further conducted to ensure data quality.

Results

Up to May 2020, nine tertiary hospitals from 9 provinces or cities participated in the NUWA project, resulting in inpatient EMR data of 8486 ovarian cancer (OC) pts. The clinico-genomic data of 1114 OC pts were available and more genomic data are on the way. Of 8486 OC pts, 5942 (70.1%) received at least one follow-up phone call. The median follow-up time was 515 (range: 1-4993) days. In December 2021, 30 tertiary hospitals will collaborate on the platform that cover 19 provinces or cities in China, with estimated clinico-genomic data of over 6000 GO pts.

Conclusions

We present a new paradigm for rapidly aggregating multi-dimensional data into a large, scalable longitudinal clinico-genomic database in China. NVWA project will catalyze data sharing across China and thereby enable precision medicine in the field of GO.

Clinical trial identification

Editorial acknowledgement