{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,23]],"date-time":"2026-09-23T17:41:18Z","timestamp":1790185278522,"version":"4.1.0"},"reference-count":28,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2018,9,15]],"date-time":"2018-09-15T00:00:00Z","timestamp":1536969600000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Pediatr Rheumatol"],"published-print":{"date-parts":[[2018,12]]},"DOI":"10.1186\/s12969-018-0276-3","type":"journal-article","created":{"date-parts":[[2018,9,16]],"date-time":"2018-09-16T00:21:44Z","timestamp":1537057304000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":20,"title":["Dutch juvenile idiopathic arthritis patients, carers and clinicians create a research agenda together following the James Lind Alliance method: a study protocol"],"prefix":"10.1186","volume":"16","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-9547-0616","authenticated-orcid":false,"given":"Casper G.","family":"Schoemaker","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Wineke","family":"Armbrust","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Joost F.","family":"Swart","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sebastiaan J.","family":"Vastert","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jorg","family":"van Loosdregt","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anouk","family":"Verwoerd","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Caroline","family":"Whiting","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Katherine","family":"Cowan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Wendy","family":"Olsder","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Els","family":"Versluis","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rens","family":"van Vliet","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marlous J.","family":"Fernhout","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sanne L.","family":"Bookelman","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jeannette","family":"Cappon","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"J. Merlijn","family":"van den Berg","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ellen","family":"Schatorj\u00e9","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Petra C. E. Hissink","family":"Muller","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sylvia","family":"Kamphuis","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Joke","family":"de Boer","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Otto T. H. M.","family":"Lelieveld","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Janjaap","family":"van der Net","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Karin R.","family":"Jongsma","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Annemiek","family":"van Rensen","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christine","family":"Dedding","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nico M.","family":"Wulffraat","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2018,9,15]]},"reference":[{"issue":"9912","key":"276_CR1","doi-asserted-by":"publisher","first-page":"101","DOI":"10.1016\/S0140-6736(13)62329-6","volume":"383","author":"MR Macleod","year":"2014","unstructured":"Macleod MR, et al. Biomedical research: increasing value, reducing waste. Lancet. 2014;383(9912):101\u20134.","journal-title":"Lancet"},{"key":"276_CR2","doi-asserted-by":"publisher","first-page":"2","DOI":"10.1186\/s40900-015-0003-x","volume":"1","author":"S Crowe","year":"2015","unstructured":"Crowe S, et al. Patients\u2019, clinicians\u2019 and the research communities\u2019 priorities for treatment research: there is an important mismatch. Res Involv Engagem. 2015;1:2.","journal-title":"Res Involv Engagem"},{"issue":"2","key":"276_CR3","doi-asserted-by":"publisher","first-page":"160","DOI":"10.1111\/j.1369-7625.2009.00549.x","volume":"13","author":"TA Abma","year":"2010","unstructured":"Abma TA, Broerse JE. Patient participation as dialogue: setting research agendas. Health Expect. 2010;13(2):160\u201373.","journal-title":"Health Expect"},{"key":"276_CR4","doi-asserted-by":"publisher","unstructured":"Odgers HL, et al. Research priority setting in childhood chronic disease: a systematic review. Arch Dis Child. 2018. \n                    https:\/\/doi.org\/10.1136\/archdischild-2017-314631\n                    \n                  .","DOI":"10.1136\/archdischild-2017-314631"},{"issue":"3","key":"276_CR5","doi-asserted-by":"publisher","first-page":"e0193579","DOI":"10.1371\/journal.pone.0193579","volume":"13","author":"E Manafo","year":"2018","unstructured":"Manafo E, et al. Patient and public engagement in priority setting: a systematic rapid review of the literature. PLoS One. 2018;13(3):e0193579.","journal-title":"PLoS One"},{"issue":"9","key":"276_CR6","doi-asserted-by":"publisher","first-page":"1392","DOI":"10.1002\/acr.21695","volume":"64","author":"A Tong","year":"2012","unstructured":"Tong A, et al. Children\u2019s experiences of living with juvenile idiopathic arthritis: a thematic synthesis of qualitative studies. Arthritis Care Res (Hoboken). 2012;64(9):1392\u2013404.","journal-title":"Arthritis Care Res (Hoboken)"},{"issue":"3","key":"276_CR7","doi-asserted-by":"publisher","first-page":"158","DOI":"10.1136\/archdischild-2015-309500","volume":"101","author":"J Bate","year":"2016","unstructured":"Bate J, et al. Public and patient involvement in paediatric research. Arch Dis Child Educ Pract Ed. 2016;101(3):158\u201361.","journal-title":"Arch Dis Child Educ Pract Ed"},{"issue":"1","key":"276_CR8","doi-asserted-by":"publisher","first-page":"13","DOI":"10.1186\/s12969-016-0073-9","volume":"14","author":"O Gomez-Ramirez","year":"2016","unstructured":"Gomez-Ramirez O, et al. A recurring rollercoaster ride: a qualitative study of the emotional experiences of parents of children with juvenile idiopathic arthritis. Pediatr Rheumatol Online J. 2016;14(1):13.","journal-title":"Pediatr Rheumatol Online J"},{"issue":"4","key":"276_CR9","doi-asserted-by":"publisher","first-page":"459","DOI":"10.1007\/s10067-010-1444-0","volume":"30","author":"L Eyckmans","year":"2011","unstructured":"Eyckmans L, et al. What does it mean to grow up with juvenile idiopathic arthritis? A qualitative study on the perspectives of patients. Clin Rheumatol. 2011;30(4):459\u201365.","journal-title":"Clin Rheumatol"},{"key":"276_CR10","doi-asserted-by":"publisher","first-page":"23","DOI":"10.1186\/1478-7547-12-23","volume":"12","author":"J Bryant","year":"2014","unstructured":"Bryant J, et al. Health research priority setting in selected high income countries: a narrative review of methods used and recommendations for future practice. Cost Eff Resour Alloc. 2014;12:23.","journal-title":"Cost Eff Resour Alloc"},{"issue":"2","key":"276_CR11","doi-asserted-by":"publisher","first-page":"55","DOI":"10.1136\/adc.2010.197947","volume":"97","author":"JE McDonagh","year":"2012","unstructured":"McDonagh JE, Bateman B. \u2018Nothing about us without us\u2019: considerations for research involving young people. Arch Dis Child Educ Pract Ed. 2012;97(2):55\u201360.","journal-title":"Arch Dis Child Educ Pract Ed"},{"key":"276_CR12","doi-asserted-by":"publisher","first-page":"22","DOI":"10.1186\/s40900-016-0037-8","volume":"2","author":"S Parsons","year":"2016","unstructured":"Parsons S, et al. Study protocol: determining what young people with rheumatic disease consider important to research (the young People's opinions underpinning rheumatology research - YOURR project). Res Involv Engagem. 2016;2:22.","journal-title":"Res Involv Engagem"},{"issue":"2","key":"276_CR13","doi-asserted-by":"publisher","first-page":"42","DOI":"10.1136\/archdischild-2012-303470","volume":"98","author":"D Bird","year":"2013","unstructured":"Bird D, Culley L, Lakhanpaul M. Why collaborate with children in health research: an analysis of the risks and benefits of collaboration with children. Arch Dis Child Educ Pract Ed. 2013;98(2):42\u20138.","journal-title":"Arch Dis Child Educ Pract Ed"},{"issue":"1","key":"276_CR14","doi-asserted-by":"publisher","first-page":"95","DOI":"10.1111\/j.1369-7625.2009.00574.x","volume":"13","author":"A van Staa","year":"2010","unstructured":"van Staa A, et al. Exciting but exhausting: experiences with participatory research with chronically ill adolescents. Health Expect. 2010;13(1):95\u2013107.","journal-title":"Health Expect"},{"issue":"4","key":"276_CR15","doi-asserted-by":"publisher","first-page":"444","DOI":"10.3899\/jrheum.160720","volume":"44","author":"DJ Tunnicliffe","year":"2017","unstructured":"Tunnicliffe DJ, et al. Healthcare and research priorities of adolescents and young adults with systemic lupus erythematosus: a mixed-methods study. J Rheumatol. 2017;44(4):444\u201351.","journal-title":"J Rheumatol"},{"issue":"1","key":"276_CR16","doi-asserted-by":"publisher","first-page":"53","DOI":"10.1186\/s12969-017-0181-1","volume":"15","author":"S Parsons","year":"2017","unstructured":"Parsons S, et al. What do young people with rheumatic disease believe to be important to research about their condition? A UK-wide study. Pediatr Rheumatol Online J. 2017;15(1):53.","journal-title":"Pediatr Rheumatol Online J"},{"issue":"6","key":"276_CR17","doi-asserted-by":"publisher","first-page":"2449","DOI":"10.1111\/hex.12213","volume":"18","author":"TA Abma","year":"2015","unstructured":"Abma TA, et al. Patient involvement in research programming and implementation: a responsive evaluation of the dialogue model for research agenda setting. Health Expect. 2015;18(6):2449\u201364.","journal-title":"Health Expect"},{"issue":"2","key":"276_CR18","doi-asserted-by":"publisher","first-page":"217","DOI":"10.1016\/j.burns.2009.04.004","volume":"36","author":"JE Broerse","year":"2010","unstructured":"Broerse JE, et al. Involving burn survivors in agenda setting on burn research: an added value? Burns. 2010;36(2):217\u201331.","journal-title":"Burns"},{"issue":"8","key":"276_CR19","doi-asserted-by":"publisher","first-page":"706","DOI":"10.1016\/S2215-0366(16)30147-X","volume":"3","author":"EF van Furth","year":"2016","unstructured":"van Furth EF, van der Meer A, Cowan K. Top 10 research priorities for eating disorders. Lancet Psychiatry. 2016;3(8):706\u20137.","journal-title":"Lancet Psychiatry"},{"issue":"0","key":"276_CR20","first-page":"D1764","volume":"161","author":"CG Schoemaker","year":"2017","unstructured":"Schoemaker CG, Prakken ABJ, Furth EF. Patients and physicians creating a research agenda together: the method of the British James Lind Alliance. Ned Tijdschr Geneeskd. 2017;161(0):D1764.","journal-title":"Ned Tijdschr Geneeskd"},{"key":"276_CR21","unstructured":"JLA. Funded research. 2018; Available from: \n                    http:\/\/www.jla.nihr.ac.uk\/making-a-difference\/funded-research.htm\n                    \n                  . Accessed 1 Sept 2018."},{"issue":"12","key":"276_CR22","doi-asserted-by":"publisher","first-page":"575","DOI":"10.1177\/014107680309601201","volume":"96","author":"I Chalmers","year":"2003","unstructured":"Chalmers I. The James Lind initiative. J R Soc Med. 2003;96(12):575\u20136.","journal-title":"J R Soc Med"},{"key":"276_CR23","unstructured":"JLA. JLA Guidebook. 2018; Available from: \n                    www.jla.nihr.ac.uk\/jla-guidebook\n                    \n                  . Accessed 1 Sept 2018."},{"key":"276_CR24","unstructured":"JLA. Top 10s of priorities for research. 2018; Available from: \n                    http:\/\/www.jla.nihr.ac.uk\/top-10-priorities\n                    \n                  . Accessed 1 Sept 2018."},{"key":"276_CR25","volume-title":"Kinderen en jongeren actief in wetenschappelijk onderzoek. Ethiek, methoden en resultaten van onderzoek met en door jeugd","author":"CW Dedding","year":"2013","unstructured":"Dedding CW, et al. Kinderen en jongeren actief in wetenschappelijk onderzoek. Ethiek, methoden en resultaten van onderzoek met en door jeugd. Houten: LannooCampus; 2013."},{"issue":"6","key":"276_CR26","doi-asserted-by":"publisher","first-page":"2066","DOI":"10.1111\/hex.12174","volume":"18","author":"I Schalkers","year":"2015","unstructured":"Schalkers I, Dedding CW, Bunders JF. \u2018[I would like] a place to be alone, other than the toilet\u2019\u2014Children\u2019s perspectives on paediatric hospital care in the Netherlands. Health Expect. 2015;18(6):2066\u201378.","journal-title":"Health Expect"},{"key":"276_CR27","doi-asserted-by":"publisher","first-page":"12","DOI":"10.1186\/s40900-016-0026-y","volume":"2","author":"M Madden","year":"2016","unstructured":"Madden M, Morley R. Exploring the challenge of health research priority setting in partnership: reflections on the methodology used by the James Lind Alliance pressure ulcer priority setting partnership. Res Involv Engagem. 2016;2:12.","journal-title":"Res Involv Engagem"},{"issue":"5","key":"276_CR28","doi-asserted-by":"publisher","first-page":"722","DOI":"10.1136\/ard.2010.135129","volume":"70","author":"MP de Wit","year":"2011","unstructured":"de Wit MP, et al. European league against rheumatism recommendations for the inclusion of patient representatives in scientific projects. Ann Rheum Dis. 2011;70(5):722\u20136.","journal-title":"Ann Rheum Dis"}],"container-title":["Pediatric Rheumatology"],"original-title":[],"language":"en","link":[{"URL":"http:\/\/link.springer.com\/content\/pdf\/10.1186\/s12969-018-0276-3.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"http:\/\/link.springer.com\/article\/10.1186\/s12969-018-0276-3\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"http:\/\/link.springer.com\/content\/pdf\/10.1186\/s12969-018-0276-3.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2019,9,14]],"date-time":"2019-09-14T19:10:45Z","timestamp":1568488245000},"score":1,"resource":{"primary":{"URL":"https:\/\/ped-rheum.biomedcentral.com\/articles\/10.1186\/s12969-018-0276-3"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2018,9,15]]},"references-count":28,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2018,12]]}},"alternative-id":["276"],"URL":"https:\/\/doi.org\/10.1186\/s12969-018-0276-3","relation":{},"ISSN":["1546-0096"],"issn-type":[{"value":"1546-0096","type":"electronic"}],"subject":[],"published":{"date-parts":[[2018,9,15]]},"assertion":[{"value":"24 July 2018","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"10 September 2018","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"15 September 2018","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"Not applicable.","order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"Not applicable.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"The authors declare that they have no competing interests.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}},{"value":"Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Publisher\u2019s Note"}}],"article-number":"57"}}