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) NENs in Europe as well as non-European countries, such as the USA, Australia, and others. ENETS has hosted a registry for NENs since 2008.
In 2020, ENETS took 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 institution of the Faculty of Medicine of Philipps-Universität Marburg.
The project is led by a steering committee comprising three members of the ENETS Executive Committee: Detlef Bartsch, Eric Baudin, and Nicola Fazio.
The new ENETS database offers a unique opportunity to collect epidemiological 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
- Provide a basis for study questions where it is unlikely to recruit a sufficient number of patients within an individual or even multi-center approach
- Set up also observational studies, and to collect and analyse data beyond the existing and defined two-level datasets of the database
- Identify patients eligible for prospective ENETS trials.
This project is a work in progress. However, ENETS currently plans that data capture will take place on three different levels:
Level 1 - minimal dataset
- Designed so that all necessary data can be entered within 15 minutes
- Is best suited for new patients with prospective data collection
- Suitable to test the feasibility of studies
- Provides answers on the “epidemiology of experts centers”
Level 2 - extended dataset
- This dataset will be designed to cover 80% of data needed for any kind of study
- Ideally, the extended and minimum datasets should be captured at the same time
Level 3 - specialised dataset
- This dataset will comprise additional variables for ENETS studies focused on specific research topics
- Proposals will need to be validated according to a defined process.