Epidemiology of gastroenteropancreatic neuroendocrine neoplasms: a review and protocol presentation for bridging tumor registry data with the Italian association for neuroendocrine tumors (Itanet) national database

Endocrine. 2024 Apr;84(1):42-47. doi: 10.1007/s12020-023-03649-4. Epub 2024 Jan 4.


Neuroendocrine neoplasms (NENs) are rare tumors with diverse clinical behaviors. Large databases like the Surveillance, Epidemiology, and End Results (SEER) program and national NEN registries have provided significant epidemiological knowledge, but they have limitations given the recent advancements in NEN diagnostics and treatments. For instance, newer imaging techniques and therapies have revolutionized NEN management, rendering older data less representative. Additionally, crucial parameters, like the Ki67 index, are missing from many databases. Acknowledging these gaps, the Italian Association for Neuroendocrine Tumors (Itanet) initiated a national multicenter prospective database in 2019, aiming to gather data on newly-diagnosed gastroenteropancreatic neuroendocrine (GEP) NENs. This observational study, coordinated by Itanet, includes patients from 37 Italian centers. The database, which is rigorously maintained and updated, focuses on diverse parameters including age, diagnostic techniques, tumor stage, treatments, and survival metrics. As of October 2023, data from 1,600 patients have been recorded, with an anticipation of reaching 3600 by the end of 2025. This study aims at understanding the epidemiology, clinical attributes, and treatment strategies for GEP-NENs in Italy, and to introduce the Itanet database project. Once comprehensive follow-up data will be acquired, the goal will be to discern predictors of treatment outcomes and disease prognosis. The Itanet database will offer an unparalleled, updated perspective on GEP-NENs, addressing the limitations of older databases and aiding in optimizing patient care. STUDY REGISTRATION: This protocol was registered in clinicaltriasl.gov (NCT04282083).

Keywords: Neuroendocrine tumors; database.; epidemiology; management; registry.

Publication types

  • Clinical Trial Protocol
  • Review

MeSH terms

  • Gastrointestinal Neoplasms* / pathology
  • Humans
  • Intestinal Neoplasms* / diagnosis
  • Intestinal Neoplasms* / epidemiology
  • Intestinal Neoplasms* / therapy
  • Italy / epidemiology
  • Multicenter Studies as Topic
  • Neuroendocrine Tumors* / diagnosis
  • Neuroendocrine Tumors* / epidemiology
  • Neuroendocrine Tumors* / therapy
  • Observational Studies as Topic
  • Pancreatic Neoplasms* / diagnosis
  • Pancreatic Neoplasms* / epidemiology
  • Pancreatic Neoplasms* / therapy
  • Prognosis
  • Registries
  • Routinely Collected Health Data
  • Stomach Neoplasms* / diagnosis
  • Stomach Neoplasms* / epidemiology
  • Stomach Neoplasms* / therapy

Associated data

  • ClinicalTrials.gov/NCT04282083