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
Prof.
Detlef Bartsch
Dr.
Eric Baudin
Dr.
Nicola Fazio
Prof.
Halfdan Sorbye
Valentina Ambrosini
Nehara Begum
B. A. Krishna
Susana Haydee Belli
Lisa Bodei
Marie-Louise van Velthuysen
Dr.
Christos Toumpanakis
Dr.
Eric Baudin
Prof.
Martyn Caplin
Justo Castaño
Jie Chen
Emanuel Christ
Timm Denecke
Christophe Deroose
Antongiulio Faggiano
Prof.
Massimo Falconi
Jenny Falkerby
Andrea Frilling
Enrique Grande
Rodney Hicks
Hans Hofland
James Howe
Ulrich Peter Knigge
Teodora Kolarova
Dr.
Beata Kos-Kudła
Anna Koumarianou
Angela Lamarca
Dr.
Francesco Panzuto
Ulrich-Frank Pape
Stefano Partelli
Marc Peeters
Aurel Perren
Vikas Prasad
Nicholas Reed
Rachel Riechelmann
Prof.
Guido Rindi
Anja Rinke
Prof.
Philippe Ruszniewski
Simron Singh
Stefan Stättner
Margot Tesselaar
Christina Thirlwell
Juan Valle
Marco Volante
Marie-Pierre Vullierme
Thomas Walter
Hong Zhao
Michel Mignon
Werner Creutzfeld
Julia M. Polak
Lars Grimelius
Jun Soga
Enrico Solcia
Jens Rehfeld
Steven Lamberts
Larry Kvols
Eric Krenning
Robert T. Jensen
Jean Claude Reubi
Prof.
Kjell Öberg
Gianfranco Delle Fave
Barbro Eriksson
Günter Klöppel
Guenter J. Krejs
Dorit Baretton / DQS Auditor
Andrea Sydow / DQS Auditor
Prof.
Wouter De Herder
Prof.
Bertram Wiedenmann
Staffan Welin
Anders Sundin
de
Joerg Schrader
Ana Paula Santos
Ramon Salazar
Prof.
Dermot O'Toole
Louis De Mestier
Wendy Martin
Katja von Storch / DQS Auditor
Ivan Borbath
Chris Verslype
Jaroslaw Cwikla
Diego Ferone
Catherine Lombard-Bohas
Juan O'Connor
Jean-Yves Scoazec
Ashley Grossmann
Frederico Costa
Matthew Kulke
Bruno Niederle
Dieter Hörsch
Eric Raymond
Scarpa Aldo Italy Pathologist
Aldo Scarpa
James Yao
Els J.M. Nieveen van Dijkum
Andreas Pascher
Prof.
Halfdan Sorbye
Wanda Geilvoet
Philippa Davies
Vera Gorbunova
Jaroslava Barkmanova
Corin Badiu
Paula Jimenez Fonseca
Alexander Siebenhüner
Ernst-Jan Speel
Arthur Braat
Ivan Borbath
Peter Stalberg
Adina Croitoru
Lynnette Fernandez-Cuesta
Peter Igaz
Tu Vinh Luong
Atsuko Kasajima
Dr.
Francesco Panzuto
Ulrich-Frank Pape
Prof.
Anne Couvelard
Marina Tsoli
ö
Barbara Kiesewetter
Seppo Langer
ver
Alia Munir
Anguraj Sadanandam
Anna Sowa-Staszczak
Ashley Grossmann
Rudolf Arnold
Manuela Albertelli
Hussein Almeamar
Damiano Caruso
Mauro Cives
Gitte Dam
Wouter W. De Herder
Maribel Del Olmo Garcia
Lawrence Dierickx
Jorge Hernando Cubero
Ilaria Marinoni
Massimo Milione
Shaunak Navalkissoor
Niklaus Schaefer
Francesca Spada
Suayib Yalcin
Prof.
Rocio Garcia-Carbonero
Prof.
Eva Tiensuu Janson
Prof.
Detlef Bartsch
Dr.
Nicola Fazio
Prof.
Jérôme Cros
Prof.
Clarisse Dromain
Prof.
Simona Glasberg
Prof.
Gregory Kaltsas
Prof.
Andreas Kjaer
Dr.
Raj Srirajaskanthan
Dr.
Mairéad McNamara
ENETS Executive Committee 2024-26
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.