ENETS DB Governance

The ENETS Database is governed by a collaborative framework, where the ENETS DB Core Working Group, appointed by the ENETS Executive Committee, works closely with the ENETS Office and our technical provider, KKS. Together, these groups ensure the database’s effective management and continuous development. All project requests related to the ENETS DB are thoroughly reviewed and supported by the ENETS DB Review and Support Board, ensuring a unified approach to advancing neuroendocrine tumor research.

ENETS DB Core Working Group

The ENETS DB is managed by the ENETS DB Core Working Group. The members of the ENETS DB Core Working Group are appointed by the ENETS Executive Board.

Tasks of the ENETS DB Core Working Group:

  • Sets up levels 1 and 2 in the database
  • Acts as a data protection commission
  • Monitors data security measurements
  • Implements and monitors ethics requirements
  • Monitors quality results
  • Initiates a review procedure in the event of potential quality issues
  • Ensures that no data is transferred from the participating center into the database prior to the signing of the collaboration contract between ENETS e.V. and the CoE
  • Arbitrates any potential disputes that may arise.

The ENETS DB Core Working Group reports all activities to the ENETS Executive Committee.

Members of the ENETS DB Core Working Group

K-ok-Bartsch 200x200

Prof.
Detlef Bartsch

Baudin

Dr.
Eric Baudin

Fazio

Dr.
Nicola Fazio

SORBYE HALFDAN PICTURE

Prof.
Halfdan Sorbye

ENETS DB Support Group

The ENETS DB Core Working Group is supported by the ENETS Office, the technical provider KKS, and the ENETS DB Support Group, who were instrumental in the development and testing of the database before its launch in June 2022. Representatives from ENETS Centers of Excellence also contributed valuable feedback during the testing phase.

We would like to extend our thanks to all the members of the ENETS DB Support Group for their dedication and expertise, including:

Corin Badiu, Jaroslava Barkmanova, Ivan Borbath, Paula Jimenez Fonseca, Rocio Garcia-Carbonero, Simona Glasberg, Hans Hofland, Gregory Kaltsas, Beata Kos-Kudła, Francesco Panzuto, Ulrich-Frank Pape, Marianne Ellen Pavel, Alexander Siebenhüner, Eva Tiensuu Janson, Chris Verslype, and Thomas Walter.

Technical partner

ENETS collaborates with the Coordination Centre for Clinical Trials (KKS) in Marburg, Germany, an academic database provider. KKS is an independent institution within the Faculty of Medicine at Philipps-Universität Marburg.

As our technical partner, KKS is contractually responsible for the technical setup, programming, maintenance, data protection, and compliance.

ENETS DB Review and Support Board

The ENETS DB Review and Support Board is responsible for managing all requests related to ENETS DB projects.

Tasks of the ENETS DB Review and Support Board:

  • Ensure the correct application of the ENETS DB publication policy.
  • Provide recommendations on accepting applications related to:
    • Accessing and analysing investigative data.
    • Hypothesis-driven research using data processed by the ENETS DB.
    • Data retrieval for abstract submissions to scientific meetings and for developing manuscripts for submission to peer-reviewed journals.
    • ENETS DB level 3 projects.
  • Safeguard the right of each CoE representative to approve or deny the use of their CoE’s data in any submitted application.

Composition of the ENETS DB Review and Support Board:

  • Members of the ENETS DB Core Working Group
  • ENETS Scientific Secretary
  • Representatives from actively participating centers
  • KKS IT expert (as required)
  • Legal advisor(as required)
  • Patient representative
  • Ethics representative

The ENETS DB Review and Support Board is currently being established.