ENETS Database

Research is at the heart of ENETS' mission.

ENETS brings extensive expertise in neuroendocrine neoplasms (NENs) through its network of Centres of Excellence (CoEs), which focus on gastroenteropancreatic (GEP), thoracic, head and neck, and urogenital NENs. The ENETS Database not only supports ENETS research but also helps NEN referral centres better structure and advance their own research activities.

The ENETS European NET Database offers a unique opportunity to collect data, contributing to an innovative study model for rare diseases. This initiative aims to create a platform for both retrospective and prospective collection of clinical data on NEN patients.

Project Vision and Aims

Since 2008, ENETS has maintained a NEN registry. In 2020, ENETS partnered with the Coordinating Center for Clinical Trials at the Philipps-University of Marburg (KKS) to elevate the project to new academic levels. A key objective of this overhaul was to ensure the integrity and reliability of the data collected, providing more robust and accurate insights.

The structure of the ENETS European NET Database (ENETS DB) strikes a balance between optimal NEN patient characterisation over time and regulatory or data constraints. It is an academic, evolving resource.

The ENETS DB is not only intended to support ENETS research but also to assist each NEN referral centre in better structuring its own research activities.

It offers a unique opportunity to collect data, contributing to an innovative study model for rare diseases. This project aims to establish a platform for both retrospective and prospective collection of clinical data on patients with NENs.

The new ENETS database will:

Collect basic clinical data on NENs from each NEN referral centre
Provide a foundation for robust clinical questions for ENETS studies, especially when recruiting sufficient patient numbers within a single centre or multi-centre approach is challenging
Identify patients who may be eligible for prospective ENETS trials
Stimulate collaboration among ENETS Centers of Excellence (CoEs)
Enable participating centres to evaluate their own data via the data reporter, which is a key component of the database's technical infrastructure

Five Key Principles of the New Database Concept:

1 Make DB capture compatible with real life

2 Completeness of data for prospective collection

3 Data quality ensured through ENETS CoEs NEN referral centers

4 Longitudinal collection of data to capture whole story

5 Data queries for individual CoEs on their own data

Who Can Be Enrolled?

Inclusion and exclusion criteria

Eligible:
Patients with head and neck, thoracic, GEP, and urogenital NENs seen at ENETS centres from 1 January 2010 onwards.
Excluded:
Medullary thyroid carcinoma, pheochromocytomas/paragangliomas, pituitary carcinoma, and small cell lung NEC.
Other Considerations:
Other NET primary tumours or patients seen prior to 2010 may be eligible for specific level 3 studies.