Citizen Science

Citizen science includes members of the public in scientific research. It is a collaborative, participatory process whereby individuals who are not professional researchers can contribute to scientific projects. Citizen contributions may range from elaborating or validating research questions, collecting data, analysing results, and/or dissemination. Patient and public involvement (PPI) is a specific form of citizen science, whereby healthcare research is carried out with or by patients and members of the public.

In the context of ITINERARE, we aim to engage citizens in every step of the research cycle. We will begin by (1) establishing and building on existing infrastructures to enhance citizen involvement and to solicit feedback on current research questions, define priorities, and future avenues. Because contributing to research requires specific skills, some of which may be new to citizens that are non-professional researchers, we will (2) co-create capacity building materials which are designed to support citizens in PPI/citizen science and facilitate collaboration with professional researchers. In a concrete application of PPI, we will (3) explore the impact of genetic testing on patients and families in the framework of newborn screening contributing to policy development surrounding these technologies. Furthermore, we aim to (4) monitor and evaluate the impact of citizen participation in research and explore future opportunities for sustainable involvement.

We aim to recruit a wide range of citizens, including but not limited to patients, young people with rare diseases, parents of people with rare diseases, siblings, and other family members, healthcare professionals (e.g. neonatologists, nurses, biomedical professionals, etc.), and patient associations.