Screen4Care's structure, also known as governance, is multi-layered to ensure appropriate levels of cooperation, scientific exchange and multi-stakeholder engagement as well as dialogue, feedback, input and collaboration with other initiatives.
Explore Screen4Care's structure by clicking on the respective boxes
Ethical, Legal and Safety Team (ELST)
The Ethics, Legal, and Safety Team (ELST) maintains an overview of the work throughout the whole course of the project and ensures that ethical matters are considered and carefully taken into account in all research activities. The ELST discusses and thinks ahead about ethical questions that might arise, as well as how they can be addressed and resolved. It also supports project partners in maintaining full compliance with ethical standards. The ELST is responsible for reporting to the project management team and to the EU Commission on ethical questions as they arise. Furthermore, Screen4Care has authorized the ELST to appoint an Independent Ethics Advisor (IEA), who is not affiliated to any of the members of the consortium. The IEA monitors the ethical matters relevant to Screen4Care and their management. In addition, the IEA is involved in relevant ELST meetings. The IEA of Screen4Care is Dr Eline Bunnik. She is an assistant professor at the department of medical ethics, philosophy and History of Medicine at Erasmus MC. Her fields of expertise include:
Ethical issues in compassionate use and access to innovative medical treatments
Ethics of predictive medicine, genetics and genomics, epigenetics, biomarkers
Research ethics, incidental findings, informed consent
Reproductive ethics, prenatal screening
Organ donation and transplantation
Innovations Board (IB)
The Innovation Board (IB) will ensure the implementation of agreed innovation and exploitation strategies.
Scientific Advisory Board (SAB)
Screen4Care also appointed a Scientific Advisory Board (SAB), which includes internationally renowned scientists, clinicians, and geneticists working in the field of rare diseases, who provide input on the scientific progress and strategic aspects. The Executive Project Management Team ensures that the composition of the SAB is appropriate to provide the guidance required. The SAB is an advisory board to Screen4Care in general and the General Assembly and Executive Project Management Team in particular. The SAB advises the General Assembly and the Executive Project Management Team upon request of the Project Leader together with the coordinator and provides non-binding advice.
Multi-Stakeholder Engagement Board (MSEB)
The Multi-Stakeholder Engagement Board (MSEB) consists of members from different areas. The MSEB includes representatives from different relevant research areas, policy-makers at national and EU levels, representatives of national and international healthcare professional associations as well as representatives of patient advocacy groups.
Patient Advisory Board (PAB)
In order to ascertain the patient-centric nature of Screen4Care, a Patient Advisory Board (PAB) was established. The PAB includes 11 representatives from rare disease patient organisations involved in the EURORDIS NBS working Group, the Digital and Data Advisory Group, European Patient Advisory Groups of the European Reference Networks as well as other patient organisation representatives. The PAB provides the insights, expertise, needs and experiences of rare disease communities to help ensure that Screen4Care’s direction, goals and strategy are closely aligned with the priorities and best interest of people living with rare diseases and their families. The PAB helps ensure that Screen4Care operates with a patient-centric approach and delivers specific outcomes with the potential to improve the lives of people living with rare diseases. The PAB advises project partners on matters and topics across all areas of Screen4Care.
Executive Project Management Team (EPMT)
The Executive Project Management Team (EPMT) is composed of the Project Leader, the Coordinator, the PMO, Work Package (WP) leads (the leads of Screen4Care's areas of focus) and co-leads. The EPMT is responsible for coordinating all research activities from all partners involved in the project. It is responsible for driving the overall execution of the project, the alignment across all areas of focus, and decision-making processes. It also ensures procedures are set in place to identify and manage innovations developed by the Consortium, and to develop a risk identification and management plan. Activities of the EPMT are helping early identification of possible technical and organisational problems and troubleshooting, ensure the smooth implementation of the project and guarantee that all efforts are focused towards Screen4Care’s objectives, deliverables and milestones.
The General Assembly (GA) is composed of one representative nominated by each partner. The GA is responsible for fulfilling Screen4Care’s obligations towards the IMI 2 Joint Undertaking and acts as the ultimate democratic decision-making body for the project.