Population Registry of Esophageal and Stomach Tumours in Ontario (PRESTO): protocol for a multicentre clinical and pathological database including 25 000 patients

Abstract

IntroductionOesophagogastric cancers carry a high mortality, economic burden and rising incidence. There is a need to monitor and improve care for this disease. Pathologic information is a cornerstone of cancer diagnosis, treatment and prognosis. Few population-based studies combine pathology information and clinical outcomes. The objective of this study is to develop a clinical and pathological database of oesophagogastric cancers to study practice patterns, resource utilisation and clinical outcomes.Methods and analysisThe Population Registry of Esophageal and Stomach Tumours in Ontario (PRESTO) will include all patients with oesophagogastric cancer diagnosed from 2002 onwards within the province of Ontario. We estimate that the sample over the first 14 years of the study will include 26 000 patients. Pathologic information from diagnostic procedures, endomucosal resection specimens and surgical resection specimens is being abstracted into a purpose-built database. Pathology information will be linked to administrative data, which capture baseline demographics, patient-reported symptoms, physician billings, hospital visits, hospital characteristics, geography and vital statistics. The registry will be updated prospectively.Ethics and disseminationEthics approval for this study was obtained from the Sunnybrook Health Sciences Centre Research Ethics Board. The PRESTO database will enable the study of oesophagogastric cancer in Ontario under six themes of inquiry: treatment, surgical outcomes, pathology, survival, health system and resource utilisation and cost. This information will be a valuable addition to the global efforts to understand ways to optimise care for these diseases.