{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,3]],"date-time":"2026-03-03T07:28:06Z","timestamp":1772522886328,"version":"3.50.1"},"reference-count":27,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2022,2,11]],"date-time":"2022-02-11T00:00:00Z","timestamp":1644537600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"funder":[{"DOI":"10.13039\/100000980","name":"Arthritis Foundation","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100000980","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100017759","name":"Childhood Arthritis and Rheumatology Research Alliance","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100017759","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000069","name":"National Institute of Arthritis and Musculoskeletal and Skin Diseases","doi-asserted-by":"publisher","award":["R21 U19 AR069522\u201001"],"award-info":[{"award-number":["R21 U19 AR069522\u201001"]}],"id":[{"id":"10.13039\/100000069","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000069","name":"National Institute of Arthritis and Musculoskeletal and Skin Diseases","doi-asserted-by":"publisher","award":["R21AR070944\u201001A1"],"award-info":[{"award-number":["R21AR070944\u201001A1"]}],"id":[{"id":"10.13039\/100000069","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["acrjournals.onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["ACR Open Rheumatology"],"published-print":{"date-parts":[[2022,5]]},"abstract":"<jats:sec><jats:title>Objective<\/jats:title><jats:p>We aimed to determine the feasibility and efficacy of online strategies to recruit parents of children with pediatric rheumatic diseases (PRDs) for research and to evaluate the degree to which known features of various rheumatic disease groups were present in the online cohort.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>We studied two cohorts; the first was composed of respondents from a cross\u2010sectional parental survey of children with PRDs contacted through patient support groups and social media platforms, and the second cohort was composed of participants from the Childhood Arthritis and Rheumatology Research Alliance (CARRA) legacy clinical registry.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>In the social media cohort, 712 complete surveys were analyzed. Most (65.9%) were referred from Facebook. The most common rheumatic disease was juvenile idiopathic arthritis (JIA) (27.1%), followed by juvenile dermatomyositis (22.1%). In the CARRA registry cohort, 7985 records were included. JIA was the largest disease group (70.3%), followed by systemic lupus erythematosus (12.0%). The age at disease onset for most PRDs was similar between those in the social media and CARRA registry cohorts (mean difference\u00a0=\u00a01.3\u2009years).<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>Recruitment through Facebook was the most fruitful. The clinical characteristics of the social media cohort were similar to those of patients recruited through a clinical registry, suggesting the utility of online recruitment for engaging disease\u2010relevant cohorts. Parents of children with rare PRDs were overrepresented in the social media cohort, perhaps reflecting the increased need of those parents to find online information and receive emotional support. Social media recruitment for research studies may help expand the number and diversity of participants in clinical research, especially by including those with rare diseases.<\/jats:p><\/jats:sec>","DOI":"10.1002\/acr2.11360","type":"journal-article","created":{"date-parts":[[2022,2,12]],"date-time":"2022-02-12T01:39:22Z","timestamp":1644629962000},"page":"410-416","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":7,"title":["Feasibility and Efficacy of Online Strategies to Recruit Parents of Children With Rheumatic Diseases for Research"],"prefix":"10.1002","volume":"4","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-0786-8788","authenticated-orcid":false,"given":"Jonathan S.","family":"Hausmann","sequence":"first","affiliation":[{"name":"Boston Children's Hospital, Program in Rheumatology, Division of Immunology  Boston Massachusetts"},{"name":"Beth Israel Deaconess Medical Center, Division of Rheumatology and Clinical Immunology  Boston Massachusetts"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jorge","family":"Vizcaino\u2010Riveros","sequence":"additional","affiliation":[{"name":"Boston University School of Public Health  Boston Massachusetts"},{"name":"Division of Adolescent\/Young Adult Medicine, Boston Children's Hospital  Boston Massachusetts"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Alexandra C.","family":"Marin","sequence":"additional","affiliation":[{"name":"Division of Adolescent\/Young Adult Medicine, Boston Children's Hospital  Boston Massachusetts"},{"name":"Department of Pediatrics Harvard Medical School  Boston Massachusetts"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Machiko","family":"Minegishi","sequence":"additional","affiliation":[{"name":"Division of Adolescent\/Young Adult Medicine, Boston Children's Hospital  Boston Massachusetts"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Rachele","family":"Cox","sequence":"additional","affiliation":[{"name":"Division of Adolescent\/Young Adult Medicine, Boston Children's Hospital  Boston Massachusetts"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Min\u2010Lee","family":"Chang","sequence":"additional","affiliation":[{"name":"Computational Health Informatics Program, Boston Children's Hospital  Boston Massachusetts"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Laura E.","family":"Schanberg","sequence":"additional","affiliation":[{"name":"Department of Pediatrics Duke University School of Medicine  Durham North Carolina"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Marc","family":"Natter","sequence":"additional","affiliation":[{"name":"Computational Health Informatics Program, Boston Children's Hospital  Boston Massachusetts"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1299-0008","authenticated-orcid":false,"given":"Elissa R.","family":"Weitzman","sequence":"additional","affiliation":[{"name":"Division of Adolescent\/Young Adult Medicine, Boston Children's Hospital  Boston Massachusetts"},{"name":"Department of Pediatrics Harvard Medical School  Boston Massachusetts"},{"name":"Computational Health Informatics Program, Boston Children's Hospital  Boston Massachusetts"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"name":"for the CARRA Legacy Registry Investigators","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2022,2,11]]},"reference":[{"key":"e_1_2_7_2_1","doi-asserted-by":"crossref","unstructured":"AmmariT Schoenebeck S. Networked empowerment on Facebook groups for parents of children with special needs. Presented at Proceedings of the 33rd Annual ACM Conference on Human Factors in Computing Systems; 2015 April 18\u201023; Seoul Republic of Korea.https:\/\/doi.org\/0.1145\/2702123.2702324","DOI":"10.1145\/2702123.2702324"},{"key":"e_1_2_7_3_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-018-0213-0"},{"key":"e_1_2_7_4_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2017.08.015"},{"key":"e_1_2_7_5_1","doi-asserted-by":"publisher","DOI":"10.1177\/1479972309348655"},{"key":"e_1_2_7_6_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.urolonc.2016.09.010"},{"key":"e_1_2_7_7_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jbspin.2013.09.003"},{"key":"e_1_2_7_8_1","doi-asserted-by":"publisher","DOI":"10.1002\/art.11122"},{"key":"e_1_2_7_9_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.chest.2017.12.018"},{"key":"e_1_2_7_10_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.g368"},{"key":"e_1_2_7_11_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1528-1167.2011.03013.x"},{"key":"e_1_2_7_12_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10803-011-1236-7"},{"key":"e_1_2_7_13_1","doi-asserted-by":"publisher","DOI":"10.1097\/01.MIB.0000441348.32570.34"},{"key":"e_1_2_7_14_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12969-017-0160-6"},{"key":"e_1_2_7_15_1","unstructured":"WeitzmanER MarinA CoxR Wisk LE.Associations among patient\u2010reported outcomes measures of physical and psychological functioning and willingness to share social media data for research among adolescents with a chronic rheumatic disease. 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