Dutch juvenile idiopathic arthritis patients, carers and clinicians create a research agenda together following the James Lind Alliance method: a study protocol

• Published in: Pediatric rheumatology online journal Vol. 16; no. 1; pp. 57 - 5
• Main Authors: 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.
• Format: Journal Article
• Language: English
• Published: England BioMed Central Ltd 15.09.2018; BioMed Central; BMC
• Subjects: Adolescent; Arthritis; Arthritis, Juvenile - therapy; Biomedical Research - methods; Biomedical Research - organization & administration; Caregivers; Child; Chronic illnesses; Collaboration; Cooperative Behavior; Decision Making; Focus Groups; Guidebooks; Humans; James Lind Alliance; Juvenile arthritis; Juvenile Idiopathic Arthritis (JIA); Medical research; Methods; Netherlands; Patient involvement; Patient Participation - methods; Patients; Pediatrics; Physicians; Qualitative research; Ratings & rankings; Research agenda; Research and development partnerships; Research Design; Researchers; Review; Rheumatic diseases; Rheumatology; Teenagers; Young adults; Netherlands; Research agenda; Patient involvement; James Lind Alliance; Juvenile Idiopathic Arthritis (JIA)

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 p...