Abstract
Hereditary nonpolyposis colorectal cancer（HNPCC） is a syndrome in which several cancers are involved in the colon, rectum, endometrium, small bowel, and ureter and renal pelvis. Although new genetic technologies are attempting to grasp HNPCC with regard to genes, HNPCC still has unclear features from genetico- and clinico-epidemiological points of view. In order to investigate the unclear points of HNPCC, the HNPCC registry and genetic testing project has been implemented from September 2002, by the Japanese Society for Cancer of the Colon and Rectum （JSCCR）. This project is the largest one since the ethical guidelines for human genomic research were established by governmental ministries in 2000. In this paper, we present an introduction to the project, which includes detection of HNPCC, registration, genetic testing and follow-up. In the future, the project would benefit by collaborating with associations and study groups related to HNPCC care in order to make a consortium dealing with all matters related with HNPCC, from medical issues to social issues. Such comprehensive approaches would lead to better medical services for HNPCC patients and their families.
