Establishing a long-term follow-up system for childhood cancer survivors in Japan (Part 1)

Abstract

With the development of medical care, the long-term survival rate of childhood cancer in Japan is estimated to have improved to 80%, which is equivalent to that in Western countries. However, a systematic long-term follow-up system for childhood cancer survivors (CCSs) does not yet exist. The reasons for this may include the lack of a nationwide data infrastructure and uniformity in clinical data to be collected. The absence of a systematic data set could be a barrier to the establishment of a systematic follow-up system; hence, the actual status of late complications among CCSs also remains unclear. It also makes setting up an effective support system difficult. Long-term follow-up for CCSs involves a wide variety of issues regarding late complications, transitions, and loss to follow-up. A nationwide system that administers follow-up care and an individualized support system based on data deduced from hypotheses about CCSs to be proven are needed to overcome these issues and ultimately return benefits to them. To address these issues, a nationwide long-term follow-up system is currently being established as part of the Comprehensive Research Project for the Promotion of Cancer Control. In this article, we describe the overall concept behind the research activities, the development of data infrastructure, and future prospects for international collaborations.