NRAS is proud to be involved in MDR-RA, a European research project that aims to improve understanding and care for people whose rheumatoid arthritis remains active despite trying several treatments. For some people, finding the right treatment can be a long and frustrating journey. MDR-RA is looking at why this happens and how care could become more personalised, timely and effective. What does MDR-RA mean? MDR-RA stands for multi-drug-resistant rheumatoid arthritis. It describes a situation where a person continues to have active RA symptoms after several different medicines have been tried. This can affect pain, fatigue, mobility, work, family life and emotional wellbeing. The MDR-RA project is exploring the clinical, biological, imaging and personal factors that may help explain why some people do not respond as expected to treatment. Why this work is important When RA does not respond well to treatment, people can face repeated changes in medication, uncertainty about what may happen next, and an ongoing impact on daily life. By learning more about difficult-to-treat RA, the MDR-RA project aims to support better decision-making and help clinicians identify which treatment approaches may be most suitable for each individual earlier in their care journey. How NRAS is involved As the UK’s national patient organisation for rheumatoid arthritis, NRAS was asked to be involved to help ensure the perspectives of people living with RA in the UK are heard throughout the project. We will support meaningful patient involvement, help communicate complex research in clear and accessible language, and share updates with the wider RA community in the UK. Championing the views and lived experiences of people with difficult-to-treat RA. Supporting clear, reliable and accessible information about the project. Helping researchers consider what matters most to people living with RA. Working with patient partners and organisations across Europe to strengthen patient involvement. “For people living with rheumatoid arthritis that has not responded to several treatments, the impact can be deeply personal. It can mean living with pain, fatigue, uncertainty and the emotional weight of not knowing what might work next. As one of the Patient Views Representatives for MDR-RA, I want to help make sure those experiences are heard and understood, so this research reflects what really matters to people with RA and supports the move towards more personalised, compassionate care.” Sadé Asker, Senior Policy Officer, NRAS In addition to our role as a national patient organisation, Sadé Asker is also involved in the project as a Patient Research Partner. Patient Research Partners (PRPs) are people living with rheumatic conditions, such as rheumatoid arthritis, who are actively involved in research projects from the onset as equal members of the team. The concept of PRPs was developed by European Alliance of Associations for Rheumatology (EULAR) to ensure that research reflects the real needs and experiences of people living with these conditions. MDR-RA collaborates with a diverse group of nine PRPs from several European countries. PRPs contribute their lived experience to help make research more relevant, meaningful, and patient-centred. They work alongside researchers, clinicians, and other experts throughout the entire project lifetime. PRPs can be involved at different stages of a research project. Patient involvement at every stage Good research should be shaped by the people it is intended to benefit. Patient Research Partners and patient organisations are involved in MDR-RA to help shape priorities, review patient-facing materials, advise on outcomes that are meaningful in everyday life, and support two-way communication between researchers and patient communities. About the MDR-RA project The MDR-RA consortium brings together partners from 12 countries across Europe, including clinicians, researchers, data specialists and patient organisations. The project will use research cohorts, a new observational study and advanced data analysis to better understand treatment resistance in RA. One of its aims is to support the development of iCare-RA, an approach designed to help clinicians make more personalised treatment decisions in the future. To read more, please see the MDR-RA website here Keeping you informed NRAS will continue to share news and updates as MDR-RA progresses. We are pleased to support research that recognises the real-life impact of difficult-to-treat RA and aims to improve care for people who need better answers, more personalised support and renewed hope for the future.