Longitudinal observational study of pediatric patients with primary brain tumors: establishment of a hospital-based registry.

Although tumors of the central nervous system (CNS) represent 2 % of all malignancies in general, they cause a disproportionately large morbidity and mortality and are the second most common form of cancer in children and the major solid tumor in childhood in the U.S., occurring in 21.3% of all children with malignant disease. The treatment of brain tumors in children and adolescents has evolved significantly in recent decades. Nowadays, most children with a diagnosis of brain tumor are treated properly and achieve prolonged survival. In order to obtain an overview of the impact of brain tumors, specialized registries, which provide information on all types of brain tumors, have emerged in several countries. Following on the pioneering Japanese and American experiences of specialized national records of brain tumors, other specialized registries were opened in European countries. This project aims to initiate a registry of the epidemiological profile of patients treated for CNS tumors in the Pediatric Cancer Center (CPC) of our hospital from January 2000 to December 2013, at diagnosis and during follow-up, updating information periodically. This data will be recorded in an electronic database capable of storing, retrieving and presenting information of interest. Prospectively recorded epidemiological data of patients diagnosed from January 2014 will be accrued, maintaining the database active to continuously record information on patients with CNS tumors treated in the CPC HIAS. Thus, creating a hospital registry of pediatric patients with CNS tumors. To this end, an instrument of data collection will be created using Google Apps (Google Inc., 2014), a digital platform with capacity for storage, creation and editing of documents and collaboration in real time over the cloud.Project proposal that was submitted to the Institutional Review Board of Hospital Infantil Albert Sabin and approved in 12/11/2014. Number of approval CAAE 30792114.0.0000.504