A Comparative Study of Cooperative Family Registries for Familial Colon Cancer in the United States and Japan

Abstract

This study reviews the development of family registries and identifies the current conditions of the infrastructure for familial colon cancer registries in the United States and Japan. The research focuses on the different courses of development and organization of family registries in the two settings. The methodology is based on content analysis of historical and interview data. The findings show that family registries in the United States have developed through cooperative work that includes not only the National Cancer lnstitute's program for cooperative agreement but also three working bodies for multi-research projects with internal regulations. In contrast, Japanese registries have relied on investigator-oriented research funding for specific diseases, leading to fewer common research platforms among different practitioners and fewer systematic procedural regulations and guidelines.