ENETS DB Structure
How is the database structured?
Data is captured in the database and organised on three levels:
- Level 1: The minimal dataset, which consists of approximately 50 items
- Level 2: The extended dataset, which consists of approximately 300 items
- Level 3: A variety of specialised datasets that will be developed project driven. Level 3 datasets are based on levels 1 and 2. In each project, existing items (of level 1 and 2) are used and new required items are programmed in addition.
The key condition, or baseline, of data capture for levels 1 and level 2 is the date of NEN diagnosis.
ENETS collaborates with the academic database provider: Coordination Centre for Clinical Trials (KKS) Marburg, Germany. The technical partner is contractually responsible for technical set up, programming, maintenance, adherence to data protection, and compliance.
Who is responsible for the development of the database?
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 and they have to be members of ENETS.
Tasks of the ENETS DB Core Working Group:
- sets up of the level 1 and the level 2 database
- acts as 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.
ENETS DB Core Working Group
Members of the ENETS DB Core Working Group are:
- Eric Baudin, France
- Nicola Fazio, Italy
- Detlef Bartsch, Germany
The ENETS DB Core Working Group has been supported by ENETS Office, the technical provider KKS, and a variety of ENETS Advisory Board members, who were involved in development and testing of the ENETS DB before the launch took place in June 2022.
Members of the ENETS DB database support group are
- Rocio Garcia-Carbonero, Spain
- Simona Glasberg, Israel
- Beata Kos-Kudła, Poland
- Gregory Kaltsas, Greece
- Francesco Panzuto , Italy
- Ulrich-Frank Pape, Germany
More interested representatives of the ENETS Centers of Excellence also have joined the group meetings sporadically to give feedback and be part of the ENETS DB testing.
Who is responsible for the ENETS DB level 3 projects and hypothesis driven data retrieval projects?
The ENETS DB Scientific Committee will handle all requests for ENETS DB related projects.
Tasks of the ENETS DB Scientific Committee:
- ensures the correct application of the ENETS DB publication policy
- gives recommendations on the acceptance or rejection of any application:
- concerning investigative data access and analysis
- hypothesis driven research of data processed by the ENETS DB
- data retrieval for the purpose of abstract submission to scientific meetings and developing manuscripts to submit to peer-reviewed journals
- ENETS DB level 3 projects
- Ensures the right of every CoE representative to agree or disagree that their CoE data will be used in any submitted application.
The ENETS DB Scientific Committee shall comprise:
- Members of the ENETS DB Core Working Group
- ENETS Scientific Secretary
- Representatives of the group of actively participating centers (currently these are 4 members)
- KKS IT expert (when required)
- Lawyer (when required)
The Scientific Committee is currently being established.