One Italian (AMRER) and two Spanish (FEP and LIRE) associations of patients are involved as patient research partners (PRPs). We will further involve patient associations in France and Switzerland.
EULAR guidelines for Patient Research Partners (PRP) inclusion have been followed. We have discussed the design of the project and the burden for patients with the PRPs integrating their feedback. PRPs will be involved in all phases of the project.
PRPs will be involved in writing the patient consent forms and the clinical record forms. Patients who will consent to participate to the study will be asked to report any adverse effects of the therapies and exacerbation of symptoms. PRPs will help with patient recruitment and education by organizing events to make patients gaining knowledge about GCA which will empower them to actively participate in the project (e.g. leaflets about the disease and the research project, meetings, information on the PRP web sites). PRPs will be asked to constantly contribute by bringing patient perspective and experiential knowledge. They will participate to the dissemination of the results among patients and non-academic institutions.