The South Korean government is struggling to secure data from patients with severe diseases, a key research resource for its national integrated bio big data project that aims to build a database of 1 million people by 2032.
According to the National Integrated Bio Big Data Project Group on Tuesday, total participants stood at 165,722 as of the end of April this year. The general public accounted for the majority at 149,972, while severe disease patients numbered just 11,274 and rare disease patients only 4,476.
The National Integrated Bio Big Data project is a large-scale state-led initiative running from 2024 to 2032. The first phase targets a total of 772,000 bio data samples by 2028, comprising 585,000 from the general public, 140,000 from severe disease patients, and 47,000 from rare disease patients. The genomic data, clinical information, and biospecimens collected will be used for discovering new drug candidates, developing biomarkers, and conducting precision medicine research.
The problem lies in the imbalance of recruitment pace. For the general public, 149,972 participants have been secured so far, achieving 25.6% of the first-phase target. In contrast, severe disease patient recruitment reached only 11,274 against the target of 140,000, a securement rate of 8.1%. Rare disease patient recruitment also stood at 4,476 against the target of 47,000, a securement rate of 9.5%.
Based on early 2025, when recruitment began in earnest, roughly one-third of the first-phase recruitment period has now passed. By that calculation, around 47,000 severe disease patients should have been secured, but actual registrations stand at only 11,274.
The project group cited a shortage of research personnel and insufficient incentives to participate as the causes of the sluggish recruitment of severe disease patients. Recruiting severe disease patients requires more manpower and cost than recruiting the general public, as it involves explanations from medical staff, consent procedures, and biospecimen collection. In particular, a shortage of research nurses and a lack of motivation among medical staff to participate are cited as the biggest reasons behind the difficulties in recruiting severe disease patients. The registration process for severe disease patients requires specialized personnel to handle medical explanations, biospecimen collection, and data entry, but securing the related staff and budget has proven difficult.
Advances in medical technology have emerged as another variable in securing biospecimens. While cancer tissue samples are being collected, the actual amount of tissue specimens available has been declining as advances in medical technology have expanded early diagnosis and as non-surgical treatments such as anticancer drugs and radiation therapy have reduced the number of surgeries performed.
The project group plans to accelerate the recruitment of severe and rare disease patients by expanding the number of participating institutions. "We are pursuing measures to expand participation, including selecting additional institutions for rare and severe diseases," an official at the National Integrated Bio Big Data Project Group said.
