Abstract
The purposes of this study were to elucidate the effectiveness of the NCVC Biobank Disease Registry System, which comprises disease registry rules and the NCVC Biobank Main Disease Registry System to provide useful disease information for research, and to identify the problems, challenges, and countermeasures in establishing a disease registry system using this system. The effectiveness of the system was demonstrated by the percentage of cases that were successfully registered and disease registration results reflecting the disease registry rules of “registration of various diseases listed in the HIS” and “registration referring to various information in the HIS”. The problems encountered while establishing the disease registry system were “difficulty in disease code selection” and “need for medical interpretation” for registering diseases, and the challenges were “tracking temporal changes in the condition of the consenting patients”, “convincing researchers to utilize the system”, and “clarifying the validity of registered diseases”. The countermeasures were to establish a committee to examine the problems individually, to create a flowchart to uniformly resolve issues, and to construct subsystems that take advantage of the strengths and characteristics of each facility to resolve issues.
