Schoemaker Casper G, Armbrust Wineke, Swart Joost F, Vastert Sebastiaan J, van Loosdregt Jorg, Verwoerd Anouk, Whiting Caroline, Cowan Katherine, Olsder Wendy, Versluis Els, van Vliet Rens, Fernhout Marlous J, Bookelman Sanne L, Cappon Jeannette, van den Berg J Merlijn, Schatorjé Ellen, Muller Petra C E Hissink, Kamphuis Sylvia, de Boer Joke, Lelieveld Otto T H M, van der Net Janjaap, Jongsma Karin R, van Rensen Annemiek, Dedding Christine, Wulffraat Nico M
Pediatric Rheumatology and Immunology, Wilhelmina Children's Hospital, University Medical Center Utrecht, Utrecht, Netherlands.
Netherlands JIA Patient and Parent Organisation, member of ENCA, Amsterdam, The Netherlands.
Pediatr Rheumatol Online J. 2018 Sep 15;16(1):57. doi: 10.1186/s12969-018-0276-3.
Research 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.
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.
A 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.
青少年特发性关节炎（JIA）的研究应帮助患者、护理人员/家长以及临床医生在诊室做出重要决策，并最终改善JIA患者的生活。到目前为止，JIA研究的这些最终用户很少参与未来研究的优先级确定。
荷兰的患者、护理人员和临床医生组织将按照詹姆斯·林德联盟（JLA）的方法，共同制定JIA的研究议程。在“优先级设定伙伴关系”（PSP）中，他们将逐步确定JIA最重要的10个未解决研究问题的清单。在此过程中，临床医生、患者及其护理人员的意见将得到同等重视。此外，还将组织焦点小组，让患有JIA的年轻人参与进来。将对所有参与者的参与情况进行监测和评估。通过这种方式，该项目将为关于如何让年轻人有意义地参与议程设定的文献不断增加做出贡献。
通过JLA方法并由患者、护理人员和临床医生共同制定的JIA研究议程，将向研究人员和研究资助者通报JIA最重要的研究问题。这将带来真正重要的研究。
