Coordination

The Coordinating Healthcare Provider (HCP) is the legal coordinator of ERN eUROGEN and is responsible for managing ERN eUROGEN’s EC grants and arranging the employment contracts of the Coordination Team in accordance with the Governance Statutes, EC Grant requirements, and job descriptions.

For the first two years of its operation, ERN eUROGEN’s Coordinating HCP was Sheffield Teaching Hospitals NHS Foundation Trust in the UK. Since April 2019, because of the UK’s withdrawal from the EU and after approval by ERN eUROGEN’s Strategic Board and Members, ERN eUROGEN’s Coordinating HCP has been Radboudumc in the Netherlands.

Radboudumc is the sole beneficiary of EC funds provided to support the network. Radboudumc is very familiar with running large EC research proposals and has extensive in-house resources, including experienced legal and ethics departments, a privacy office, an EU grants team, financial support teams, a clinical trials office, data entry support, data stewards, and data protection support. Radboudumc employees (both clinical and non-clinical, across multiple departments in the HCP) support the Coordinator and the Coordination Team. This streamlined process and the significant contributions of the healthcare professionals working there facilitate the management of ERN eUROGEN.

The Coordinating HCP’s Chief Executive Officer (CEO) appoints a Coordinator and Sub-Coordinator (deputy) based on their proven ability to coordinate and lead a network, as well as their medically relevant activities in the field. They are elected for a five-year mandate, renewable for a second term upon approval of the Strategic Board. The current Coordinator is Prof. Peter Mulders, and the current Sub-Coordinator is Prof. Ivo de Blaauw.

Assisted by the other administrative bodies of the network, the Coordinator supports and facilitates coordination both within and outside the network and represents the network at EC and external meetings. The Coordinator chairs the Strategic Board meetings, and in the case of a draw, the Coordinator has the deciding vote on the Strategic Board.

The Coordinator oversees the successful management and control of work, in particular:

• coordinating the work of all the Workstreams, Expertise Areas, and Working Groups,
• identifying, tracking, managing, and resolving programme and project issues and risks,
• proactively disseminating and communicating programme and project information to all stakeholders, supported by the Coordination Team,
• managing the overall work plans to ensure work is assigned and deliverables are completed on time and within budget.

The Coordinator is a member of the ERN Coordinators Group (ERN CG), which brings together the Coordinators of all the ERNs and focuses its activities on strategic issues relevant to the ERNs’ implementation, functioning and governance and ensures the consistency and efficiency of the ERNs’ actions, in particular regarding those issues which are common to all ERNs. When required, the ERN CG may also advise the EC and the Member States on matters related to the ERNs.

The Coordination Team oversees all aspects of ERN eUROGEN’s Strategic Objectives and Work Packages, is responsible for the formal management activities of all components of the programme and related projects, and maintains effective communication with the EC.

You can read about the current members of the Coordination Team here.

The ERN eUROGEN European Patient Advocacy Group (ePAG) (see about the ePAG here) and the network’s Supporting Partners (see about the Supporting Partners here) also provide advice and input to the Coordination Team.

The Operational Board comprises the Workstream, Clinical, Education, and Research Leads (see below) and the ePAG Chair. It advises the Coordination Team regarding objectives, strategy, and activities when input from the full Strategic Board is not required.

In accordance with the EC Delegated Decision 2014/286/EU, the Strategic Board is the main governing body of ERN eUROGEN. It comprises ERN eUROGEN Full Members, Affiliated Partners, and the ePAG Chair and is chaired by the Coordinator.

The Strategic Board is required to make major decisions relating to:

• electing/appointing/terminating the Coordinating HCP, Coordinator and Sub-Coordinator,
• accepting/terminating Strategic Board members, Full Members, Affiliated Partners, and Supporting Partners (organisations),
• approving the submission of EC grant proposals,
• creating additional Workstreams and Expertise Areas,
• approving amendments to the Governance Statutes,
• dissolving the ePAG, the Strategic Board, and/or the network, if required,

The Strategic Board is also responsible for:

• adopting annual and multiannual Work Packages, Specific Objectives, strategic plans and other network activities,
• monitoring, approving, and amending all activities, outcomes, and initiatives in accordance with the monitoring and assessment system for the ERNs,
• empowering patient organisations,
• setting up ad hoc Working Groups as required,
• authorising requests for grants from third-party entities.
• adopting (and agreeing to amendments of) relevant network policies on:
  1. Sustainability plans
  2. Integration of new Full Members and Affiliated Partners,
  3. Responsibilities/Tasks/Actions of Full Members and Affiliated Partners,
  4. Rules of Engagement with Supporting Partners, Collaborative Partners, the ePAG, and other Memorandums of Understanding,
  5. Withdrawal, non-compliance and termination,
  6. Reimbursement of expenses,
  7. Engagement with industry
  8. Conflicts of interest,
  9. Data protection,
  10. Other future major network protocols or actions with direct involvement of and required actions from Full Members, Affiliated Partners, and other partners.

Annual Strategic Board Meeting Reports

• 2023
• 2022
• 2021
• 2020
• 2019
• 2018

ERN eUROGEN comprises three Workstreams (WS) further subdivided into Expertise Areas (EAs). Each WS has its own WS Lead, Clinical Lead, Education Lead and Research Lead. Each EA has an Expertise Area Coordinator and vice-EAC who are appointed by and report progress to their respective WS Lead.

The WS Leads/EACs are responsible for organising the day-to-day working mechanisms of their respective groups. All subgroups are actively involved in implementing the ERN eUROGEN Work Packages. The WS Leads and EACs ensure the flow of data and information within their specific group(s) and the provision of services and advice offered by ERN eUROGEN.

Internal Working Groups

ERN eUROGEN has Working Groups (WGs) for its Work Packages (WPs) to implement and facilitate collaboration and exchange between different Workstreams (WS), Expertise Areas (EAs), other ERNs, and other organisations (national, EU, and global) and activities. These WGs form a horizontal organisational structure in contrast to the vertical organisational structure of the Coordinating HCP, Coordinator, Coordination Team, Boards, Workstreams (WS), and Expertise Areas (EAs).

Each WG is chaired by a member appointed by the Strategic Board/Operational Board/Coordination Team (as appropriate) and reports to the Coordination Team. Such groups include the ERN eUROGEN Quality Improvement Group and the ERN eUROGEN Guidelines Expert Panel (and its subgroups).

Cross-ERN Working Groups

The Rules of Procedure of the European Reference Networks Coordinators Group (ERN-CG) state that the ERN-CG might decide, based on the perceived needs of the ERNs implementation process, to activate Working Groups (WGs) to instruct and discuss topics of interest for the Coordinators and/or for the EC. The WGs and their status are listed below.

Maintained Working Groups (ERN eUROGEN involved in all):

• WG on legal and ethical issues and relations with stakeholders
• WG on Management Activities
• WG on Monitoring
• WG on Knowledge Generation
• WG on Improvement of the evaluation

To be created Working Groups (ERN eUROGEN will be involved in all):

• WG on Clinical Practice Guidelines
• WG on Ukraine-related activities
• WG on Transition

Postponed / Put on hold / Terminated Working Groups

• WG on Registries
• WG on Integration
• WG on Research
• WG on IT Advisory Group
• WG on Cross-border healthcare continuity of the ERNS and external relations

The Governance Statutes provide a foundational structure for the operation and management of ERN eUROGEN. They set out common rules and obligations and ensure transparency, accountability, and the involvement of all stakeholders in the decision-making process. As indicated in the legal base, all stakeholders are bound by the Governance Statutes decided by the Strategic Board.

The Governance Statutes can be downloaded here.

Our Development Strategy, as agreed by the Strategic Board, can be downloaded here.