OMERACT is a global, volunteer-driven, not for profit organization committed to improving outcomes for patients with autoimmune and musculoskeletal diseases through advancing the design and quality of clinical studies.
Through rigorous methodology and our global Working Groups, OMERACT supports the development of Core Outcome Sets (COS), identifying patient and disease-relevant areas to be measured (domains) and the corresponding measurement instruments for use in clinical trials, including those for regulatory approval of new treatments.
Since 2002 OMERACT has acknowledged and welcomed the pivotal role of patients in outcomes research and the need to provide support and education to Patient Research Partners (PRPs) who participate in Working Groups and the biannual meetings. OMERACT acknowledges the value of working together with PRPs to achieve its research methodology objectives. OMERACT is a recognized leader in the engagement of patients at all critical levels of international rheumatology research. Very few other international reseach organizations have had this kind of legacy thus far.
Our PRP vision for the future is one of seamless involvement of patients who are trained in the basic ways of research to share their lived experience with chronic disease in early and continuous dialogue and process, that produces outcome measures, tools, resources, and study results that are meaningful to patients at the local, national and international research levels.
We believe we can make a difference, and hope you will join us!
The OMERACT PRP Support Team, a volunteer-driven committee, plays a pivotal role in integrating PRPs into OMERACT. This five-member team, including a chair on the OMERACT Management Group, strives to enhance PRP engagement, improve communications, and ensure PRP perspectives are represented within OMERACT.
Team members are selected for their dedication to patient-centered research and their ability to bring diverse international perspectives.
Through regular meetings and strategic initiatives, the team focuses on fostering a supportive environment for PRPs, advocating for their involvement in decision-making, and contributing to the development of educational resources. Their work culminates annually in a comprehensive review and planning session, aiming to continuously advance PRP engagement and influence within OMERACT.
"I know that’s important to researchers from the medical side, but from the patient’s side this is what’s really important to me, so how do we meet in the middle?" - (Patient, Canada)
"And the patient perspective opens up the whole realm of things we haven’t looked at." - (Rheumatologist, USA)
"My main concern was ‘will I understand enough to really be able to contribute anything’, but very quickly I realized that my own experience of the disease would be more than enough." - (Patient, UK)