ArticleAnnals of the rheumatic diseases2024
EULAR recommendations for the involvement of patient research partners in rheumatology research: 2023 update.
Article in Annals of the rheumatic diseases, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 29 papers, 1 of them a synthesis that pooled it.
What it found
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
29 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Patient research partner involvement in rheumatology research: a systematic literature review informing the 2023 updated EULAR recommendations for the involvement of patient research partners.Annals of the rheumatic diseases · 2024Pooled it
- 'It Felt Safe'. Experiences With an Early Cognitive Behavioural Approach After Lumbar Spinal Surgery: A Qualitative Study of Participants' Perspectives.Physiotherapy research international : the journal for researchers and clinicians in physical therapy · 2026Trial
- "If he's in pain i'm also in pain": a qualitative study on support needs of significant others of persons with rheumatoid arthritis.International journal of qualitative studies on health and well-being · 2026Article
- Learning to live with RA as an unwelcome companion-patients' experiences after 1 to 2 years of DMARD treatment.EULAR rheumatology open · 2026Article
- Building the future of patient-centred research: an EULAR PARE community of practice advancing patient research partner involvement in rheumatology.EULAR rheumatology open · 2026Article
- Patient awareness and perception of cardiovascular risk in rheumatic and musculoskeletal diseases: results from an international survey.EULAR rheumatology open · 2026Article
- Associations between work ability and work participation after rehabilitation: a longitudinal multicentre cohort study.EULAR rheumatology open · 2026Article
- "I am struggling to find an explicit task"-a midterm evaluation of patient research partner involvement in HIPPOCRATES translational research.EULAR rheumatology open · 2026Article
- Ultrasonographic Evaluation of Asymptomatic Shoulder Involvement in Rheumatoid Arthritis: A Prospective Case-Control Study.Journal of clinical medicine · 2026Article
- Training Adolescents and Young Adults to be Partners in Research: Co-Creating the Young Patients' Autoimmune Research and Empowerment Alliance.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- The co-creation of a COMbined Fatigue Intervention (COMFI) for people with inflammatory arthritis: a complex intervention.EULAR rheumatology open · 2026Article
- The Patient Voice in Atopic Eczema Guidelines: How Do We Make it Standard Practice?The patient · 2026Review
- Discordance Between Patients and Physicians on Key Determinants of Systemic Lupus Erythematosus Burden: Insights From a French Comprehensive Survey.ACR open rheumatology · 2026Article
- Article
- Co-developing a complex transfer intervention with parents: a case study of involvement and parental experience.Research involvement and engagement · 2026Article
- Article
- Mapping the future: identifying research priorities in rheumatoid arthritis with the James Lind Alliance approach.BMC rheumatology · 2025Article
- Citizen science in osteoarthritis research: a scoping review.Journal of orthopaedic surgery and research · 2025Article
- The role of the patient in rheumatology.Nature reviews. Rheumatology · 2025Article
- On the edge of dependency: how older adults with rheumatoid arthritis experience living with frailty.EULAR rheumatology open · 2025Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
25 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundSince the publication of the 2011 European Alliance of Associations for Rheumatology (EULAR) recommendations for patient research partner (PRP) involvement in rheumatology research, the role of PRPs has evolved considerably. Therefore, an update of the 2011 recommendations was deemed necessary.
methodsIn accordance with the EULAR Standardised Operational Procedures, a task force comprising 13 researchers, 2 health professionals and 10 PRPs was convened. The process included an online task force meeting, a systematic literature review and an in-person second task force meeting to formulate overarching principles (OAPs) and recommendations. The level of agreement of task force members was assessed anonymously (0-10 scale).
resultsThe task force developed five new OAPs, updated seven existing recommendations and formulated three new recommendations. The OAPs address the definition of a PRP, the contribution of PRPs, the role of informal caregivers, the added value of PRPs and the importance of trust and communication in collaborative research efforts. The recommendations address the research type and phases of PRP involvement, the recommended number of PRPs per project, the support necessary for PRPs, training of PRPs and acknowledgement of PRP contributions. New recommendations concern the benefits of support and guidance for researchers, the need for regular evaluation of the patient-researcher collaboration and the role of a designated coordinator to facilitate collaboration. Agreements within the task force were high and ranged between 9.16 and 9.96.
conclusionThe updated EULAR recommendations for PRP involvement are more substantially based on evidence. Together with added OAPs, they should serve as a guide for researchers and PRPs and will ultimately strengthen the involvement of PRPs in rheumatology research.
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