ENETS Database

ENETS has a long experience in neuroendocrine neoplasms (NENs) and has a high level of expertise and multi-center co-operation resulting from its networking with ENETS Centers of Excellence (CoE) for gastroenteropancreatic (GEP), thoracic, head and neck, and urogenital NENs in Europe as well as non-European countries, such as the USA and Australia.

ENETS has hosted a NEN registry since 2008.

In 2020, ENETS made the decision to take the project to new academic levels with a new partner, the Coordinating Center for Clinical Trials at the Philipps-University of Marburg (KKS). KKS is an independent academic institution of the Faculty of Medicine of Philipps-Universit├Ąt Marburg.

Publication on the ENETS Registry

Click here to read the academic publication on ENETS' initial Registry tool, which was published in April 2023.

Aims

Research is crucial for ENETS.

The ENETS European NET Database (ENETS DB) structure is a compromise between best modality of NEN patient characterisation during their lifetime, regulatory and information constraints. It is an academic and evolving database.

ENETS DB is expected not only to be a pillar of ENETS research but also to help each NEN referral center to better structure its own activity research.

The ENETS European NET Database (ENETS DB) offers a unique opportunity to collect data by contributing to an innovative study model for rare diseases. This project aims to re-establish a platform for the retrospective and prospective collection of clinical information on patients with NENs.

The new ENETS database will:

  • Collect basic clinical data on NENs at each NEN Referral Center
  • Provide a basis for robust clinical questions for ENETS studies where it is unlikely that the required number of patients can be recruited within a single center or even multi-center approach
  • Identify patients eligible to lay the foundations of prospective ENETS trials
  • To stimulate collaboration among ENETS CoEs
  • Allow each participating center to evaluate its own data via the data reporter, which constitutes part of the database's technical set-up.  

ENETS DB definitions and concepts

Inclusion and exclusion criteria

- Head and neck, thoracic, GEP and urogenital NEN patients seen in centers from the 1 January 2010 onwards are eligible to be enrolled.
- Medullary thyroid carcinoma, pheo-/paragangliomas, pituitary carcinoma, and small cell lung NEC are excluded.
- Other NET primary or patients seen prior 2010 may be discussed as part of specific level 3 studies.

Five propositions that are fundamental to the new database concept:

1 Make DB capture compatible with real life

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2 Completeness of data for prospective collection

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3 Data quality ensured through ENETS CoEs NEN referral centers

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4 Longitudinal collection of data to capture whole story

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5 Data queries for individual CoEs on their own data

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