Clinical Epidemiology (Oct 2016)
Danish Gynecological Cancer Database
Abstract
Sarah Mejer Sørensen,1 Signe Frahm Bjørn,1 Kirsten Marie Jochumsen,2 Pernille Tine Jensen,2 Ingrid Regitze Thranov,1 Helle Hare-Bruun,3 Lene Seibæk,4 Claus Høgdall1 1Department of Gynecology, Rigshospitalet, University of Copenhagen, Copenhagen, Denmark; 2Department of Obstetrics and Gynecology, Odense University Hospital, Odense, Denmark; 3Research Centre for Prevention and Health, The Capital Region of Denmark, Glostrup, Denmark; 4Department of Gynecology and Obstetrics, Aarhus University Hospital, Aarhus, Denmark Aim of database: The Danish Gynecological Cancer Database (DGCD) is a nationwide clinical cancer database and its aim is to monitor the treatment quality of Danish gynecological cancer patients, and to generate data for scientific purposes. DGCD also records detailed data on the diagnostic measures for gynecological cancer. Study population: DGCD was initiated January 1, 2005, and includes all patients treated at Danish hospitals for cancer of the ovaries, peritoneum, fallopian tubes, cervix, vulva, vagina, and uterus, including rare histological types. Main variables: DGCD data are organized within separate data forms as follows: clinical data, surgery, pathology, pre- and postoperative care, complications, follow-up visits, and final quality check. DGCD is linked with additional data from the Danish "Pathology Registry", the "National Patient Registry", and the "Cause of Death Registry" using the unique Danish personal identification number (CPR number). Descriptive data: Data from DGCD and registers are available online in the Statistical Analysis Software portal. The DGCD forms cover almost all possible clinical variables used to describe gynecological cancer courses. The only limitation is the registration of oncological treatment data, which is incomplete for a large number of patients. Conclusion: The very complete collection of available data from more registries form one of the unique strengths of DGCD compared to many other clinical databases, and provides unique possibilities for validation and completeness of data. The success of the DGCD is illustrated through annual reports, high coverage, and several peer-reviewed DGCD-based publications. Keywords: quality, research, gynecological cancer, operation, pathology, follow-up