New data for determining the epidemiology and improving the treatment of neuroendocrine tumours

Gastroenteropancreatic neuroendocrine tumours (GEP-NETs) are a group of low-incidence neoplasms with a wide spectrum of clinical behaviour and an annual incidence of 1-2 cases per 100,000 inhabitants in Europe and the United States. The complex epidemiology of these tumours poses a major challenge to researchers and to the specialist physicians and surgeons who treat them.

According to the article appearing in Annals of Oncology, which reviews a total of 907 tumours recorded in the RGETNE, the most common types in Spain are carcinoids (55%), pancreatic nonfunctional tumours (20%), metastatic NETs of unknown primary (9%), insulinomas (8%) and gastrinomas (4%). The registry reveals new information about the epidemiology and prognosis of GEP-NETs in Spain and current clinical practices, providing valuable information for improving our understanding of the regional disparities in the incidence, patterns of care and survival of this heterogeneous disease across different continents and countries. The cross-disciplinary, multi-centre study was directed by the researcher Rocío García-Carbonero (Hospital Virgen del Rocío, Seville) and is the widest study of GEP-NETs to have been conducted in southern Europe.

Participants in the nationwide study include the expert Carles Villabona-Artero, a professor with the UB’s Department of Clinical Sciences and practising endocrinologist at the Hospital de Bellvitge, who contributed a large number of clinical cases to the RGETNE registry, which stores data provided by researchers from across Spain in a unified database. Antoni Monleón-Getino, a professor with the UB’s Department of Statistics and technical coordinator of the RGETNE, was responsible for the complex statistical analysis of the extensive clinical data gathered, which involved continuous re-design and adaptation of the electronic registry to accommodate changes in clinical practice and the exact pathologies of patients.

The Spanish Scientific Society of Neuroendocrine Tumors (GETNE), directed by Ramon Salazar, a researcher for the ICO and IDIBELL, was set up in 2005 to improve the diagnosis and treatment of patients with neuroendocrine tumours in a national cross-disciplinary context. In addition to setting up the RGETNE, at the request of the Spanish Society of Endocrinology and Nutrition (SEEN) and the Spanish Cooperative Group for Group for Digestive Tract Tumor Therapy (TTD), the GETNE has been particularly active in promoting scientific projects and initiatives focusing on scientific and clinical aspects of endocrine tumours.

The results published in Annals of Oncology highlight the scientific value of the National Cancer Registry of Spain (RGETNE) – which will eventually be integrated into a unified European registry – in furthering our understanding of NET-GEPs and their evolution at the national level. It is hoped that this new knowledge will make a decisive contribution to improving the diagnosis, treatment and quality of life of affected patients.

Full bibliographic information
Garcia-Carbonero, R.; Capdevila, J.; Crespo-Herrero, G.; Díaz-Pérez, J. A.; Martínez del Prado, M. P.; Alonso Orduña, V.; Sevilla-García, I.; Villabona-Artero, C.; Beguiristain-Gómez, A.; Llanos-Muñoz, M.; Marazuela, M.; Alvarez-Escola, C.; Castellano, D.; Vilar, E.; Jiménez-Fonseca, P.; Teulé, A.; Sastre-Valera, J.; Benavent-Viñuelas, M.; Monleon, A.; Salazar, R. “Incidence, patterns of care and prognostic factors for outcome of gastroenteropancreatic neuroendocrine tumors (GEP-NETs): results from the National Cancer Registry of Spain (RGETNE)”. Annals of Oncology, 2010, doi: 10.1093/annonc/mdq022.