Neuroendocrine tumors: a registry of 1,000 patients

Abstract

Neuroendocrine tumors (NET) can originate diffusely in most organs, with varying clinical presentations. The relative rarity of these tumors, previously referred to as carcinoids, encouraged several centers worldwide to study NET. Since 2003, a similar group was established in , the GETNE - Grupo de Estudo de Tumores Neuroendocrinos (Neuroendocrine Tumors Study Group) that included 32 centers, from all regions of Brasil. A patient database was initiated, collecting information about NET, regardless of the site of origin.

Objectives: The present study shows initial results of 1000 patients included.

Methods: Descriptive statistical analyses, as well as overall survival rates for different groups of NET patients registered by GETNE.

Results: Most patients presented with thoracic NET (71.6%), while 20.2% had gastro-entero-pancreatic tumors. Median follow-up of all patients included was 33.7 months (range 1-141 months). At the time of the analysis, 29.3% of the patients were still alive (of these, 45.7% were alive with no evidence of disease).

Conclusion: This is the largest database of NET in, and further accrual of new patients, as well as individual study results are expected in the near future.