About Us

OMERACT

OMERACT is a global, volunteer-driven, not for profit organisation 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.

OMERACT is unique in the inclusion of patients early into the conceptual design and implementation of research.

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Our Vision

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 Network

Each PRP has a valuable lived experience of their health condition that complements the learned knowledge of the professional perspective. Utilizing experiential knowledge is facilitated in OMERACT by ensuring PRPs are given sufficient training and support throughout their participation in Working Groups and/or at OMERACT meetings. To facilitate the effective participation of PRPs, OMERACT has established the PRP Network.

The Network of PRPs is vital to the future of the OMERACT organization and to advance patient-engaged outcomes research. The main objectives of the network are twofold:

1. Enhancing the education of PRPs to strengthen PRP roles and skills and encourage continuous involvement in OMERACT research work streams;

2. Establishing and expanding the network of OMERACT PRPs across rheumatic diseases to facilitate inclusion in OMERACT projects.

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"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)