Project management

The project to develop the ERN eUROGEN registry will have a lean and mean organisational structure given that there are only two participants, who are also very closely connected to ERN eUROGEN, making communication simple and easy in all directions.

The Project Steering Committee (PSC) is the decision-making body consisting of Dr. W. Witjes, Mr. D. Shilhan and Dr. L. van der Zanden. They will decide based on consensus, otherwise by an absolute majority. The PSC will manage the development of the registry, take the strategic decisions, and monitor all activities and outputs to ensure quality in compliance. They will adopt procedures based on openness, ongoing communication, and public accountability to ensure transparent decision-making. The PSC will communicate monthly using teleconference-based audio/video tools and will hold official meetings at least twice a year. Once a year, the PSC meeting will be extended with an Advisory Board meeting.

The Project Coordinator, Prof. W. Feitz, will be responsible for monitoring the project, ensuring it is implemented properly and will act as an intermediate between the project participants, the Advisory Board and EC-CHAFEA. He will be in contact with the ICT provider, review all deliverables and reports, and submit them to EC-CHAFEA. Proper financial management will be ensured by the Radboudumc.

Radboudumc will give financial and administrative support for the day-to-day management of the project. The Project Management Office (PMO) will work closely together with the Project Coordinator to ensure operational management, i.e., organising meetings, distributing material, managing communication tools, and progress management. The PMO is responsible for allowing partners to carry out their specific tasks within the project, which includes maintaining communication tools (i.e., intranet, audio tools, web tools, website, mailing lists), organising meetings, preparing reports and deliverable templates, managing the risk mitigation plan and more. The PMO will be responsible for the financial administration, assist partners with all administrative issues, and will streamline all communication regarding the work plan.

The Advisory Board (AB) is a consulting body consisting of three ERN eUROGEN members and two patient representatives. The ERN eUROGEN members will be appointed based on their expertise in medical, ethical, and scientific issues in the field of rare uro-recto-genital disease and related complex conditions, as well as their commitment. They will also act as representatives of the network and the Healthcare Providers (HCPs). The patient representatives will be approached from the Dutch patient organization for rare uro-recto-genital diseases and will participate in the annual meeting with the PSC.

The European Commission (EC), through CHAFEA, the funding agency, is in contact with the Project Coordinator and follows up on project progress and the milestones achieved.