Yangsan Pusan National University Hospital Rare Disease Center Leads the 'National Bio Big Data Construction Project'

Director Jeon Jong-geun of the Rare Disease Center at Yangsan Pusan National University Hospital is explaining the project to the participant. (Photo by Yangsan Pusan National University Hospital)

[Asia Economy Yeongnam Reporting Headquarters Reporter Kang Woo-kwon] The Rare Disease Center at Yangsan Pusan National University Hospital, designated as the Ulsan Gyeongnam Regional Center for Rare Diseases, announced on the 11th that it completed the first patient registration on the 5th as the first domestic hub center for the ‘National Bio Big Data Construction Project’ cooperation institution, designated in June this year.

The ‘National Bio Big Data Construction Project’ is a national project that collects clinical information and genetic data of rare disease patients to identify diseases and research treatments. It is implemented as a cross-ministerial project through cooperation among the Ministry of Health and Welfare, the Ministry of Science and ICT, and the Ministry of Trade, Industry and Energy.

From this year to next year, a two-year pilot project will lay the foundation for building bio big data, collecting data from rare disease patients.

During the pilot project period, Yangsan Pusan National University Hospital plans to recruit 400 rare disease patients to build clinical information and genomic data.

Eligible rare disease patients for participation are those “judged by specialized medical staff to have rare diseases strongly suspected to be caused by genetic abnormalities or gene-related backgrounds.”

Those who wish to participate can register by visiting one of the 16 rare disease cooperation institutions nationwide, including Yangsan Pusan National University Hospital, and completing consultation with specialized medical staff and consent forms.

Center Director Jeon Jong-geun emphasized, “We will do our best to ensure that the national project to identify the causes of rare diseases and build bio big data proceeds smoothly and bears fruit.”

This content was produced with the assistance of AI translation services.