Descriptive longitudinal study of pediatric patients with primary brain tumors: establishment of a hospital registry
Creators: name: Freire, Paula
name: Felix, Francisco
name: Santos, Kelly
name: Rayra Lima
name: Bastos, Maria Vilani
name: Juvenia Fontenele
Publisher: name: F1000Research
Year: 2015

description: Although tumors of the central nervous system (CNS) represent 2% of all malignancies in general they have disproportionately large morbidity and mortality and represent the second most common form of cancer in children and the major solid tumor in childhood in the US, occurring in around 21.3% of all children with malignant diseases (ACS, 2010). This project aimed to build a record of the epidemiological profiles of patients undergoing treatment for CNS tumors in our center, creating a hospital registry of pediatric patients with CNS tumors. Thus, a data collection tool was created using the Google Apps platform (Google Inc., 2014).<br><br>To date, 143 responses were registered (35% of 409 total patients in the dataset). Thirty-five per cent (48) were from Fortaleza (state capital) and 65% from the rest of the state. Gender: 49% (70) were male and 51% (73) were female (ratio M: F 1: 1.04). Histopathological diagnosis: 34% (49) patients had no histology because they did not undergo surgery. The most frequent histology was medulloblastoma comprising 9% (13) of patients. Secondly, diffuse astrocytoma and ependymoma, each with 8% (11) of patients. Other histological types less frequent. Topography: most of the patients (22%) had diffuse pontine tumor (brainstem), while 14% (20) were centered in the cerebellar vermis, 9% (13) were in the IV ventricle and the remainder was distributed in several areas of the central nervous system. Seventy percent of the patients were not evaluated for the presence of neuraxial metastases, 22% (32) had no metastases and the rest (8%) had metastases at diagnosis. As for surgical treatment, 66% (95) patients underwent surgery, and 22% (31) had complete resection. Approximately 59% (85) received radiotherapy. About 63% (89) patients received some form of chemotherapy. Regarding the outcomes, 35% (46) of the patients achieved a complete remission after the first treatment, while 11% (14) had disease progression during treatment. In the last evaluation 25% (36) of the patients were alive and free of disease, while 42% (60) were alive, but with active disease. Approximately 29% (41) of patients died of tumor progression.<br><br>By using the Google Apps platform we could perform a faster data collection, categorization and interpretation. Better understanding of the population affected by this group of neoplastic diseases is important for assessing the strategies currently used in the diagnosis and treatment. It also has a critical importance for hospital management and, by extrapolation to other populations and institutions, has the potential to be input into health systems in a comprehensive manner. In addition, the database generated can be used as historical data in clinical research and can support the planning of future clinical trials and be source of information to calculate the posterior probability of events of interest. The establishment of a specialized hospital record in brain tumors may also serve as a seed for the escalation of this service to the multi-institutional, regional and even state level.