Neuroendocrine tumors: a registry of 1000 patients

Abstract

SUMMARYNeuroendocrine 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.

Incidence of gastroenteropancreatic neuroendocrine tumours: a systematic review of the literature

“…In some of the countries, IRs were published several times for different time periods, allowing some insights into trends in the incidence of GEP-NETs (the UK, France, Switzerland, Norway and Sweden). Some countries reported large series of GEP-NET patients but were not population based and therefore could not report on annual IRs (Li et al 2008, Younes 2008, Lombard-Bohas et al 2009, Ploeckinger et al 2009, Garcia-Carbonero et al 2010. Some registries reported the IRs of all GEP-NETs or all NETs, including lung NETs, and not site-specific IRs (Scotland, The Netherlands, Denmark and early reports from England and Ireland), and were therefore not included in this review (Buchanan et al 1986, Watson et al 1989, Newton et al 1994, Westergaard et al 1995, Quaedvlieg et al 2001.…”

Rare neuroendocrine tumours: Results of the surveillance of rare cancers in Europe project

“…3,8,9 The low incidence rate has resulted in only a few relevant studies, and makes a large experience for any single healthcare professional unlikely. [10][11][12] A high quality database with reliable diagnoses, which needs large clinical experience, is a condition sine qua non for epidemiological research on any rare disease. 13 A major step forward in predicting the biological behaviour of NETs was made in 2000 by the development of a new World Health Organization (WHO) morphological classification, including NETs, based on histopathological and biological characteristics.…”

Clinicopathological Features and Prognosis of Gastroenteropancreatic Neuroendocrine Tumors: Analysis from a Single-institution

“…These tumors are relatively rare and display a diverse spectrum of clinical presentations; approximately two-thirds of NETs are found in the gastrointestinal tract (Modlin et al, 2003;Modlin et al, 2008;Younes, 2008). According to an analysis of the National Cancer Institute's Surveillance, Epidemiology and End Results database (SEER, http://seer.cancer.gov/data/index.…”