The prospective lynch syndrome database

Abstract

The aim of the Prospective Lynch Syndrome Database (PLSD) is to store prospectively obtained information on Lynch syndrome (LS) patients to provide knowledge on the natural course of the disease and effects of interventions. Information is currently entered in spreadsheet format and manipulated in Oracle© but may in principle be entered in any suitable format and analysed by any suitable methods. The PLSD outputs annual incidences of cancer in 5-year cohorts in categories. These incidence data are exported as the underlying data for the website www.lscarisk.org, where the user interactively may calculate the lifetime risk for which cancer for any Lynch syndrome patient when indicating the patient’s age, gender and genetic variant. The PLSD may be expanded to include any prospective information on a Lynch syndrome patient. Further functionality may be added for data to be manipulated and output tailored for additional purposes/research projects. The original data stored, or results obtained through manipulating these data inside the PLSD, may be exported for further studies.