Get Involved
PatientInvolvement Strategy in MDR-RA
Patient involvement is central to the success of MDR-RA, ensuring that the lived experiences and perspectives of people with rheumatoid arthritis guide every stage of our research and innovation. By making patients true partners in the project,MDR-RA aims to deliver solutions that are meaningful, practical, and impactful for those most affected.
Our PatientAdvisory Panel (PAP) is coordinated by EULAR-PARE and includes dedicated Patient Research Partners(PRPs) from across Europe—individuals living with RA who bring valuable expertise and real-world insights to the consortium. All PRPs have completed comprehensive EULAR training, equipping them to contribute fully to a wide range of topics, from clinical research and epidemiology to communication and health economics. Many have extensive experience in both national and international research initiatives.
EULAR ensures that patient voices are heard at every level of MDR-RA by strategically matching PRPs with the most relevant Work Packages (WPs) according to their backgrounds and interests. PRPs actively shape research by reviewing study designs, clinical protocols, informed consent documents, and patient-facing materials. They help define what data is collected, participate in data analysis, and play a key role in communication and dissemination—reviewing lay summaries, developing outreach materials, and ensuring all results are accessible and understandable to patients and the public.
In addition, PRPs are involved in the co-development of the iCare-RA tool and other care models, bringing the patient’s perspective directly into innovation for future clinical practice.
Continuous engagement and feedback are built into MDR-RA. The PAP meets regularly—initially on a monthly basis—to discuss project progress, share experiences, and provide input on emerging issues. EULAR also organizes annual in-person meetings to strengthen collaboration, support shared learning, and maximize the value of patient contributions. These sessions provide a platform to refine strategies for patient involvement and ensure that the project remains responsive to patient needs.
EULAR further supports this process by conducting annual evaluations using established engagement questionnaires, gathering feedback to improve and adapt the patient involvement strategy throughout the life of the project.
- MDR-RA is committed to following EULAR’s best practice recommendations for collaborative research. Our approach to patient involvement will be regularly assessed and updated, ensuring that patient partnership remains a driving force behind all project activities and outcomes.
