Comprehensive Registry in Japan

Abstract

We reviewed the history of the esophageal cancer registry in Japan. The Registration Committee for Esophageal Cancer, a part of the Japan Esophageal Society, has registered cases of esophageal cancer since 1976 and published the first issue of the Comprehensive Registry of Esophageal Cancer in Japan in 1979. The Act on the Protection of Personal Information was promulgated in 2003 and began to be enforced in 2005. The esophageal cancer registry required some improvements to comply with the Acts. A new registration system was considered for several years and was finally completed in 2008. Specifically, “anonymity in an unlinkable fashion” using encryption with a “hash function” was introduced. Finally, the registry resumed registering esophageal cancer cases that had been treated in 2001. Here, we briefly summarize the Comprehensive Registry of Esophageal Cancer in Japan for the years 2001–2012. A total of 65,762 cases were registered from a total of 3,038 institutions in Japan. Histological diagnoses of biopsy specimens showed that squamous cell carcinoma and adenocarcinoma accounted for 88.3–92.9% and 2.3–6.0% (ranges between 2001 and 2012) of all the cases, respectively. The 5-year survival rates of patients treated using endoscopic resection, concurrent chemoradiotherapy, radiotherapy alone, chemotherapy alone, or esophagectomy were 80.0–88.1%, 19.3–32.4%, 15.1–32.3%, 1.7–9.4%, and 42.6–55.9% (ranges between 2001 and 2012), respectively. Concerning the approach used to perform an esophagectomy, 14.3–42.1% (ranges between 2001 and 2012) of the cases were performed thoracoscopically, laparoscopically, or mediastinoscopically. Since 2019, the registration method for esophageal cancer cases of the Japan Esophageal Society has been changed to the registration method using the National Clinical Database (NCD), with some modifications, to improve the efficacy of registering esophageal cancer cases. We hope that this Comprehensive Registry of Esophageal Cancer in Japan helps to improve all aspects of the diagnosis and treatment of esophageal cancer.