Dutch patients, caregivers and healthcare professionals generate first nationwide research agenda for juvenile idiopathic arthritis

Abstract Background Involving the end-users of scientific research (patients, carers and clinicians) in setting research priorities is important to formulate research questions that truly make a difference and are in tune with the needs of patients. We therefore aimed to generate a national research agenda for Juvenile Idiopathic Arthritis (JIA) together with patients, their caregivers and healthcare professionals through conducting a nationwide survey among these stakeholders. Methods The James Lind Alliance method was used, tailored with additional focus groups held to involve younger patien... Mehr ...

Verfasser: Anouk Verwoerd
Wineke Armbrust
Katherine Cowan
Lotte van den Berg
Joke de Boer
Sanne Bookelman
Marjan Britstra
Jeannette Cappon
Maria Certan
Christine Dedding
Karin van den Haspel
Petra Hissink Muller
Karin Jongsma
Otto Lelieveld
Jorg van Loosdregt
Wendy Olsder
Johanna Rocha
Ellen Schatorjé
Natasja Schouten
Joost F. Swart
Sebastiaan Vastert
Margot Walter
Casper G. Schoemaker
Dokumenttyp: Artikel
Erscheinungsdatum: 2021
Reihe/Periodikum: Pediatric Rheumatology Online Journal, Vol 19, Iss 1, Pp 1-10 (2021)
Verlag/Hrsg.: BMC
Schlagwörter: Juvenile idiopathic arthritis / Research priority setting / James Lind Alliance / Patient involvement / Pediatrics / RJ1-570 / Diseases of the musculoskeletal system / RC925-935
Sprache: Englisch
Permalink: https://search.fid-benelux.de/Record/base-26627653
Datenquelle: BASE; Originalkatalog
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Link(s) : https://doi.org/10.1186/s12969-021-00540-2