ReviewPediatric rheumatology online journal2018
Dutch juvenile idiopathic arthritis patients, carers and clinicians create a research agenda together following the James Lind Alliance method: a study protocol.
Review in Pediatric rheumatology online journal, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers, 2 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
16 citing papers in PubMed, 2 syntheses or guidelines 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
- Reducing fatigue in pediatric rheumatic conditions: a systematic review.Pediatric rheumatology online journal · 2021Pooled it
- Significant pain decrease in children with non-systemic Juvenile Idiopathic Arthritis treated to target: results over 24 months of follow up.Pediatric rheumatology online journal · 2023Trial
- Defining pain trajectories in juvenile arthritis and associated patient characteristics.Arthritis research & therapy · 2026Article
- A systemic, multistakeholder participatory approach to research, innovation and action agenda setting for more integrated and effective prevention of HIV and other STIs: the case of Catalonia, Spain.Frontiers in public health · 2026Article
- The academic impact of paediatric research agendas: a descriptive analysis.Research involvement and engagement · 2024Article
- Matching researchers' needs and patients' contributions: practical tips for meaningful patient engagement from the field of rheumatology.Annals of the rheumatic diseases · 2023Article
- Research agenda setting with children with juvenile idiopathic arthritis: Lessons learned.Child: care, health and development · 2022Article
- Dutch patients, caregivers and healthcare professionals generate first nationwide research agenda for juvenile idiopathic arthritis.Pediatric rheumatology online journal · 2021Article
- Recommendations from a James Lind Alliance priority setting partnership - a qualitative interview study.Research involvement and engagement · 2020Article
- Four normative perspectives on public health policy-making and their preferences for bodies of evidence.Health research policy and systems · 2020Article
- Rare musculoskeletal diseases in adults: a research priority setting partnership with the James Lind Alliance.Orphanet journal of rare diseases · 2020Article
- Treating juvenile idiopathic arthritis to target: what is the optimal target definition to reach all goals?Pediatric rheumatology online journal · 2020Article
- Improving the Translational Medicine Process: Moving Patients From "End-Users" to "Engaged Collaborators".Frontiers in medicine · 2019Article
- If patients are the true north, patient-centeredness should guide research.Nature reviews. Rheumatology · 2019Article
- Participation in a single-blinded pediatric therapeutic strategy study for juvenile idiopathic arthritis: are parents and patient-participants in equipoise?BMC medical ethics · 2018Article
Corrections and comments
- Commented on by
Authors and funding
25 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundResearch on Juvenile Idiopathic Arthritis (JIA) should support patients, caregivers/parents (carers) and clinicians to make important decisions in the consulting room and eventually to improve the lives of patients with JIA. Thus far these end-users of JIA-research have rarely been involved in the prioritisation of future research. MAIN BODY: Dutch organisations of patients, carers and clinicians will collaboratively develop a research agenda for JIA, following the James Lind Alliance (JLA) methodology. In a 'Priority Setting Partnership' (PSP), they will gradually establish a top 10 list of the most important unanswered research questions for JIA. In this process the input from clinicians, patients and their carers will be equally valued. Additionally, focus groups will be organised to involve young people with JIA. The involvement of all contributors will be monitored and evaluated. In this manner, the project will contribute to the growing body of literature on how to involve young people in agenda setting in a meaningful way.
conclusionA JIA research agenda established through the JLA method and thus co-created by patients, carers and clinicians will inform researchers and research funders about the most important research questions for JIA. This will lead to research that really matters.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.