{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,18]],"date-time":"2026-08-18T05:23:22Z","timestamp":1787030602800,"version":"build-2736575974"},"reference-count":27,"publisher":"The Journal of Rheumatology","issue":"12","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["J Rheumatol"],"published-print":{"date-parts":[[2020,12,1]]},"abstract":"<jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>To improve the quality and participation in pediatric rheumatology research, patient-prioritized studies should be emphasized. We collaborated with United States\u2013based pediatric rheumatology advocacy organizations to survey patients and caregivers of children with rheumatic diseases to identify what research topics were most important to them.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>We conducted Web-based surveys and focus groups (FG) of patients and caregivers of children with juvenile myositis (JM), juvenile arthritis (JA), and childhood-onset systemic lupus erythematosus (cSLE). Surveys were emailed to listservs and posted to social media sites of JM, JA, and cSLE patient advocacy organizations. An initial survey asked open-ended questions about patient\/caregiver research preferences. Responses were further characterized through FG. A final ranking survey asked respondents to rank from a list of research themes the 7 most important to them.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>There were 365 JM respondents, 44 JA respondents, and 32 cSLE respondents to the final ranking survey. The top research priority for JM was finding new treatments, and for JA and cSLE, the priority was understanding genetic\/environmental etiology. The 3 prioritized research themes common across all disease groups were medication side effects, disease flare, and disease etiology.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>Patient-centered research prioritization is recognized as valuable in conducting high-quality research, yet there is a paucity of data describing patient\/family preferences, especially in pediatrics. We used multimodal methodologies to assess current patient\/caregiver research priorities to help frame the agenda for the pediatric rheumatology research community. Patients and caregivers from all surveyed disease groups prioritized the study of medication side effects, disease flares, and disease etiology.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.3899\/jrheum.190934","type":"journal-article","created":{"date-parts":[[2020,2,15]],"date-time":"2020-02-15T12:25:26Z","timestamp":1581769526000},"page":"1800-1806","source":"Crossref","is-referenced-by-count":13,"title":["Identifying Research Priorities among Patients and Families of Children with Rheumatic Diseases Living in the United States"],"prefix":"10.3899","volume":"47","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-5451-1936","authenticated-orcid":false,"given":"Colleen K.","family":"Correll","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mitali","family":"Dave","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anne F.","family":"Paul","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Vincent Del","family":"Gaizo","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1648-9595","authenticated-orcid":false,"given":"Suzanne","family":"Schrandt","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Roushanac S.","family":"Partovi","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8235-1781","authenticated-orcid":false,"given":"Esi M.","family":"Morgan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"2262","published-online":{"date-parts":[[2020,2,15]]},"reference":[{"key":"2022062017050880000_47.12.1800.1","doi-asserted-by":"publisher","DOI":"10.1002\/art.23087"},{"key":"2022062017050880000_47.12.1800.2","doi-asserted-by":"crossref","first-page":"1996","DOI":"10.1002\/art.40191","article-title":"The incidence and prevalence of systemic lupus erythematosus in San Francisco County, California: The California Lupus Surveillance Project","volume":"69","author":"Dall\u2019Era","year":"2017","journal-title":"Arthritis Rheumatol"},{"key":"2022062017050880000_47.12.1800.3","doi-asserted-by":"publisher","DOI":"10.1002\/art.11122"},{"key":"2022062017050880000_47.12.1800.4","doi-asserted-by":"crossref","first-page":"2195","DOI":"10.1007\/s11136-015-0953-3","article-title":"PROMIS(\u00ae) pediatric self-report scales distinguish subgroups of children within and across six common pediatric chronic health conditions","volume":"24","author":"DeWalt","year":"2015","journal-title":"Qual Life Res"},{"key":"2022062017050880000_47.12.1800.5","doi-asserted-by":"publisher","DOI":"10.1002\/art.10095"},{"key":"2022062017050880000_47.12.1800.6","doi-asserted-by":"publisher","DOI":"10.1136\/archdischild-2017-314631"},{"key":"2022062017050880000_47.12.1800.7","doi-asserted-by":"crossref","first-page":"53","DOI":"10.1186\/s12969-017-0181-1","article-title":"What do young people with rheumatic disease believe to be important to research about their condition? A UK-wide study","volume":"15","author":"Parsons","year":"2017","journal-title":"Pediatr Rheumatol Online J"},{"key":"2022062017050880000_47.12.1800.8","doi-asserted-by":"publisher","DOI":"10.3899\/jrheum.160720"},{"key":"2022062017050880000_47.12.1800.9","unstructured":"PCORI . The Patients Advocates and Rheumatology Teams Network for Research and Service (PARTNERS) Consortium \u2013 phase I. [Internet. Accessed July 17, 2020.] Available from: www.pcori.org\/research-results\/2013\/patients-advocates-andrheumatology-teams-network-research-and-service"},{"key":"2022062017050880000_47.12.1800.10","unstructured":"PCORI . The value of engagement. [Internet. Accessed July 17, 2020.] Available from: www.pcori.org\/engagement\/what-we-mean-engagement"},{"key":"2022062017050880000_47.12.1800.11","doi-asserted-by":"crossref","first-page":"57","DOI":"10.1186\/s12969-018-0276-3","article-title":"Dutch juvenile idiopathic arthritis patients, carers and clinicians create a research agenda together following the James Lind Alliance method: a study protocol","volume":"16","author":"Schoemaker","year":"2018","journal-title":"Pediatr Rheumatol"},{"key":"2022062017050880000_47.12.1800.12","unstructured":"The James Lind Alliance. [Internet. Accessed July 17, 2020.] Available from: www.jla.nihr.ac.uk"},{"key":"2022062017050880000_47.12.1800.13","doi-asserted-by":"publisher","DOI":"10.1016\/j.jbi.2008.08.010"},{"key":"2022062017050880000_47.12.1800.14","doi-asserted-by":"crossref","first-page":"30","DOI":"10.1186\/s12969-017-0160-6","article-title":"The new Childhood Arthritis and Rheumatology Research Alliance (CARRA) registry: design, rationale, and characteristics of patients enrolled in the first 12 months","volume":"15","author":"Beukelman","year":"2017","journal-title":"Pediatr Rheumatol"},{"key":"2022062017050880000_47.12.1800.15","doi-asserted-by":"publisher","DOI":"10.1016\/j.jaut.2015.08.002"},{"key":"2022062017050880000_47.12.1800.16","doi-asserted-by":"crossref","first-page":"24","DOI":"10.1111\/joim.12444","article-title":"The juvenile idiopathic inflammatory myopathies: pathogenesis, clinical and autoantibody phenotypes, and outcomes","volume":"280","author":"Rider","year":"2016","journal-title":"J Intern Med"},{"issue":"Suppl 1","key":"2022062017050880000_47.12.1800.17","doi-asserted-by":"crossref","first-page":"i55","DOI":"10.1093\/rheumatology\/kew427","article-title":"Pathways leading to an immunological disease: systemic lupus erythematosus","volume":"56","author":"Zharkova","year":"2017","journal-title":"Rheumatology"},{"key":"2022062017050880000_47.12.1800.18","doi-asserted-by":"publisher","DOI":"10.1002\/art.22787"},{"key":"2022062017050880000_47.12.1800.19","first-page":"421","article-title":"Responsiveness of clinical measures to flare of disease activity in juvenile idiopathic arthritis","volume":"23","author":"Magni-Manzoni","year":"2005","journal-title":"Clin Exp Rheumatol"},{"key":"2022062017050880000_47.12.1800.20","doi-asserted-by":"publisher","DOI":"10.1177\/0961203313499419"},{"key":"2022062017050880000_47.12.1800.21","doi-asserted-by":"crossref","first-page":"1342","DOI":"10.1093\/rheumatology\/kex162","article-title":"Environmental factors associated with disease flare in juvenile and adult dermatomyositis","volume":"56","author":"Mamyrova","year":"2017","journal-title":"Rheumatology"},{"key":"2022062017050880000_47.12.1800.22","doi-asserted-by":"publisher","DOI":"10.1016\/j.jclinepi.2013.11.013"},{"key":"2022062017050880000_47.12.1800.23","doi-asserted-by":"publisher","DOI":"10.3899\/jrheum.181165"},{"key":"2022062017050880000_47.12.1800.24","doi-asserted-by":"publisher","DOI":"10.3899\/jrheum.181088"},{"key":"2022062017050880000_47.12.1800.25","doi-asserted-by":"publisher","DOI":"10.1002\/acr.20151"},{"key":"2022062017050880000_47.12.1800.26","unstructured":"Lupus Foundation of America [Internet. Accessed July 17, 2020.] Available from: www.lupus.org"},{"key":"2022062017050880000_47.12.1800.27","doi-asserted-by":"crossref","first-page":"123","DOI":"10.1007\/s40271-014-0051-6","article-title":"The potential of crowdsourcing to improve patient-centered care","volume":"7","author":"Weiner","year":"2014","journal-title":"Patient"}],"container-title":["The Journal of Rheumatology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/syndication.highwire.org\/content\/doi\/10.3899\/jrheum.190934","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2022,6,20]],"date-time":"2022-06-20T20:07:56Z","timestamp":1655755676000},"score":1,"resource":{"primary":{"URL":"http:\/\/www.jrheum.org\/lookup\/doi\/10.3899\/jrheum.190934"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2020,2,15]]},"references-count":27,"journal-issue":{"issue":"12","published-online":{"date-parts":[[2020,12,1]]},"published-print":{"date-parts":[[2020,12,1]]}},"alternative-id":["10.3899\/jrheum.190934"],"URL":"https:\/\/doi.org\/10.3899\/jrheum.190934","relation":{},"ISSN":["0315-162X","1499-2752"],"issn-type":[{"value":"0315-162X","type":"print"},{"value":"1499-2752","type":"electronic"}],"subject":[],"published":{"date-parts":[[2020,2,15]]}}}