Clinical Epidemiology (Oct 2016)
Danish Pancreatic Cancer Database
Abstract
Claus Fristrup,1 Sönke Detlefsen,2 Carsten Palnæs Hansen,3 Morten Ladekarl4,5 1Department of Surgical Gastroenterology, 2Department of Pathology, Odense University Hospital, Odense, 3Department of Surgical Gastroenterology, Rigshospitalet, Copenhagen, 4Department of Oncology, 5Department of Gastroenterological Surgery L, Aarhus University Hospital, Aarhus C, Denmark Aim of database: The Danish Pancreatic Cancer Database aims to prospectively register the epidemiology, diagnostic workup, diagnosis, treatment, and outcome of patients with pancreatic cancer in Denmark at an institutional and national level. Study population: Since May 1, 2011, all patients with microscopically verified ductal adenocarcinoma of the pancreas have been registered in the database. As of June 30, 2014, the total number of patients registered was 2,217. All data are cross-referenced with the Danish Pathology Registry and the Danish Patient Registry to ensure the completeness of registrations. Main variables: The main registered variables are patient demographics, performance status, diagnostic workup, histological and/or cytological diagnosis, and clinical tumor stage. The following data on treatment are registered: type of operation, date of first adjuvant, neoadjuvant, and first palliative chemo- or chemoradiation therapy, and dates for milestones in referrals, diagnostic workup, treatment decisions, and treatment. For patients undergoing resection, data on operative evaluation of tumor stage, histological diagnosis, and duration of hospital stay are registered. Descriptive data: Death is monitored using data from the Danish Civil Registry. This registry monitors the survival status of the Danish population, and the registration is virtually complete. All data in the database are audited by all participating institutions, with respect to baseline characteristics, key indicators, and survival. The results are published annually. Conclusion: The Danish Pancreatic Cancer Database has registered data on 2,217 patients with microscopically verified ductal adenocarcinoma of the pancreas. The data have been obtained nationwide over a period of 4 years and 2 months. The completeness of registration was 82%. The observed overall 3-year survival after diagnosis was 6%. Keywords: pancreatic cancer, national database, survival
