Patient research partners
Patient involvement is central to STRATA-FIT’s success both regarding the research and in achieving our key aim of long-term impact and benefit based on shared decision making. Throughout the entire project, STRATA-FIT consortium members will work closely with EULAR-PARE, which is the network of national organizations of people with arthritis/rheumatism across Europe.
EULAR will be responsible for organising a Patient Advisory Panel (PAP) to monitor the progress and give input to tasks and deliverables across the project, from requirement statements to research design, data collection to analysis, exploitation to communication, as well as to advise on further involvement of patients.
Members of the STRATA-FIT Patient Advisory Panel
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Bertha Maat
Bertha is a member of the National Association ReumaZorg Nederland and has Rheumatoid Arthritis (RA).
Her experience in PRP includes, since 2007, a collaboration with Prof. Dirkjan van Schaardenburg at Amsterdam University Medical Centers on early diagnosis of RA and pre-RA, and a collaboration with Prof. Conny van der Laken from Amsterdam UMC on the added value of MRI and CT-scan in RA diagnosis. Since 2019, she has been part of the EULAR PARE network, collaborating with research consortia and participating in other EULAR projects.
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Birgit Barten
Birgit is a member of the Patient Research Partner network of the German League. She joined the EULAR network in 2017 after completing German PRP training in 2016. Since then, she has contributed to national and international studies, guidelines, and projects, emphasizing the importance of patient voices in clinical research.
She has participated in Scientific Advice Procedures and reviewed leaflets and patient information. Since 2017, she has been a member of the Research Committee of Deutsche Rheuma-Liga, and since 2021, she has been a member of the EULAR Quality of Care Committee.
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Elsa Mateus
Elsa has been active in rheumatology patient organizations for over 10 years. She chaired the EULAR PARE Committee representing People with Arthritis/Rheumatism in Europe (2019-2021).
Her experience in patient involvement in research includes reviewing lay summaries and grant applications, contributing to study groups and task forces, and coordinating the Patient Advisory Group for the HarmonicSS consortium (2017-2020). She has participated in several IMI, H2020, and Horizon Europe grant applications focused on patient involvement. Her contributions to rheumatology research were recognized with a Medal of Merit in Science by the Ministry of Science, Technology and Higher Education of Portugal (2020).
Diagnosed with Juvenile Idiopathic Arthritis in 1977, she is currently President of the Board of the Portuguese League Against Rheumatic Diseases and of EUPATI Portugal.
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Irene Pitsillidou
Irene worked at CYLPER (Cyprus League for People with Rheumatism), where she has volunteered in various roles for over 16 years, including 12 years as Vice President and General Secretary. She is also the President of the Osteoarthritis Group at CYLPER.
Irene is a member of several organizations: Cyprus Confederation of the Organisations of the Disabled, Cyprus Health Insurance Organization, e-Breakthrough Editorial Board at EULAR PARE and European Patient Advocate Group (ePAG) of EURORDIS – Rare Diseases Europe.
Since 2010, she is a EULAR Patient Research Partner (PRP) and she has participated in numerous training seminars and contributed to many research projects. Irene became a PRP to ensure that patients have a voice in healthcare and research decisions that directly impact their daily lives.
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Slađana Rumpl Tunjić
Slađana is a member of the EULAR PARE Committee and Young PARE. She decided to become a PRP after completing a PRP training course organized for Young PARE members. Inspired by this experience, she realized she could contribute her knowledge and also learn more about her disease.
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Natasha Trehan
Natasha is the Founder and Executive Director of the Take a Pain Check Foundation. As a PRP, she has contributed to various groups, providing input, reviewing documents, creating knowledge translation pieces, writing publications, and presenting at conferences. Her collaborations include working with the COVID-END team, Choice Research Lab, The Hospital for Sick Children, UCAN CANDU, CanChild, and more.
She is also a trained patient researcher through the Patient and Community Engagement in Research Program at the University of Calgary, where she completed a one-year course and conducted research on other patients.
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Sofia Valpereiro
Sofia works in the academic sector for a Unit (IAU) dedicated to accelerating the uptake of research into practice to improve healthcare quality. The work is primarily funded through external sources in collaboration with health and care partners.
She is a member of the EULAR Implementation Study Group and is particularly interested in health innovation and health inequalities. She is excited to be a PRP for a large project addressing the complexity of using technology to support patients’ health journeys.
She is also a member of Versus Arthritis (Gout & Osteoarthritis patient) and a patient volunteer for Our Future Health, the UK’s largest health research programme.
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This project has received funding from the European Union’s Horizon Europe research and innovation programme under grant agreement no. 101080243 from the Swiss State Secretariat for Education, Research and Innovation (SERI) and from Hungary’s National Research, Development and Innovation (NRDI) Fund.
Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union. Neither the European Union nor the granting authority can be held responsible for them.