National Bio Big Data project begins 1st patient registration
Seoul National University Hospital’s Rare Disease Center(Director. Chae, Jong-hee) said it has registered the first patient to begin the National Bio Big Data project.
SNUH’s Rare Disease Center serves as a central support center for 16 institutions related to rare disease treatment across the nation. The Rare Disease Center oversees patient recruitment and selects patients who meet the conditions.
Chae Jong-hee, head of the SNUH’s Rare Disease Center, said it is difficult to diagnose a rare disease, and it takes a considerable time to pull off a successful treatment. Therefore, patients with rare diseases need state support absolutely, she said.
She went on to say that although the number of patients for each rare disease is small, the total number of patients with rare diseases is estimated to be 5 to 10 percent of the total population. “If we gather scattered valuable clinical and genetic information as big data, we can find treatment clues such as finding new causative genes,” she said.