National Integrated Bio Big Data Project

The National Bio Big Data Development Project is a government-led, citizen-participatory initiative designed to create a dataset that enables the early prediction and diagnosis of diseases prevalent among Koreans.
Through voluntary public participation, the project collects health and genomic information from Korean citizens, manages it within a secure platform, and establishes a system that allows qualified researchers to analyze the data responsibly.

From 2020 to 2022, the Rare Disease Center of Seoul National University Hospital (SNUH) conducted the National Bio Big Data Pilot Project targeting patients with rare diseases and their families.
As a patient recruitment institution, SNUH registered approximately 23% of the total participants and built whole-genome sequencing data.
Through this effort, the center contributed to developing patient recruitment criteria and ensuring data quality for the pilot project, as well as establishing a foundation for the main project — including biospecimen collection, transfer, genomic data generation, reinterpretation, and secure storage.

Building on this experience, the National Integrated Bio Big Data Construction Project will be carried out from July 2024 to December 2028 over a five-year period.
Unlike the pilot project, which focused solely on rare diseases, the main project aims to construct integrated bio big data for more than 770,000 participants, encompassing patients with cancer, severe diseases, and the general population.
The SNUH Rare Disease Center has been designated as a rare disease registration institution and is committed to contributing to efficient patient recruitment and high-quality data production.