Developing a customized database for NET in a developing country

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Introduction: The establishment of a neuroendocrine registry is extremely hard in developing countries. Many patients miss follow-up after surgical procedures and many die in different hospitals with a distinct national security health system number. As in any developing country, Brazil has a large movement of people to urban areas, making the tracking of former addresses impossible for patients who were treated some years prior. Therefore, it is more feasible to evaluate a demographic distribution of neuroendocrine tumors by topography or histological subtype, but the analysis of clinical events, such as progression-free survival, disease-free survival, time to progression or overall survival, is compromised.

Aim(s): To develop an easy-to-use platform for neuroendocrine patients so that clinicians and surgeons involved in the care of these individuals may input data at diagnosis and to keep track of them in the long-term. This will be tested initially in a single university center, the principal goal being to reduce the loss of data in less than 10% instead of the current 60% loss.

Materials and methods: The computorized platform was created and structure as a database specific to neuroendocrine tumors. The software will be available for use in reviewing the structure language, allowing the cross-checking of reports and supply studies. To include this data, we use The TELEFORM vs. 4.0 software. The input data includes demographics, past medical information, symptoms at diagnosis, morphological and pathological analysis, statement, treatments, follow-up, image evaluation and tumor schedule. The form will be included on the source data showing the follow-up time indicating the next visit according to the type of tumor.

Conference: 7th Annual ENETSConcerence (2010)

Presenting Author: Garicochea B

Authors: Bós A, Shavinsky C, Pereira de Carvalho G, Barcellos de Almeida P, Scandura K,

Keywords: NET, software, developing country, registry,