Development of long-term follow-up system for childhood cancer survivors in Japan ~Toward preemptive medicine~

Abstract

The main purposes of long-term follow-up for childhood cancer survivors (CCS) include prevention, early detection, and appropriate management of late complications to achieve long-term survival with a high quality of life. For this purpose, it is necessary to generate original evidence in Japan. To address the issues, the establishment of a nationwide long-term follow-up system is currently underway as a part of the Comprehensive Research Project for the Promotion of Cancer Control, known as the “Long-Term Follow-Up Matsumoto Group”. In this framework, we play a major role in the development of information infrastructure as a data center.

We intend to utilize a bidirectional database that enables both physicians and CCS to access and enter data. These data can be used to develop a prediction model to allow for long-term follow-up as a preemptive medicine.

In addition, we would like to establish a system to enable precision survivorship according to the individual risk of CCS by linking CCS’s clinical information and genomic data. Importantly, long-term follow-up should not be initiated after the completion of treatment but should begin with a cancer registry to recognize the presence of each case of CCS.

This article describes the progress of developing an information infrastructure for the Long-Term Follow-Up Matsumoto Group. Regarding the project, we discuss the strategy of the database and prospects for international collaboration.