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Feasibility and Efficacy of Online Strategies to Recruit Parents of Children With Rheumatic Diseases for Research.

Publication ,  Journal Article
Hausmann, JS; Vizcaino-Riveros, J; Marin, AC; Minegishi, M; Cox, R; Chang, M-L; Schanberg, LE; Natter, M; Weitzman, ER ...
Published in: ACR Open Rheumatol
May 2022

OBJECTIVE: 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. METHODS: We studied two cohorts; the first was composed of respondents from a cross-sectional 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. RESULTS: 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 = 1.3 years). CONCLUSION: 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-relevant 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.

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Published In

ACR Open Rheumatol

DOI

EISSN

2578-5745

Publication Date

May 2022

Volume

4

Issue

5

Start / End Page

410 / 416

Location

United States

Related Subject Headings

  • 3202 Clinical sciences
 

Citation

APA
Chicago
ICMJE
MLA
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Hausmann, J. S., Vizcaino-Riveros, J., Marin, A. C., Minegishi, M., Cox, R., Chang, M.-L., … CARRA Legacy Registry Investigators, . (2022). Feasibility and Efficacy of Online Strategies to Recruit Parents of Children With Rheumatic Diseases for Research. ACR Open Rheumatol, 4(5), 410–416. https://doi.org/10.1002/acr2.11360
Hausmann, Jonathan S., Jorge Vizcaino-Riveros, Alexandra C. Marin, Machiko Minegishi, Rachele Cox, Min-Lee Chang, Laura E. Schanberg, Marc Natter, Elissa R. Weitzman, and Elissa R. CARRA Legacy Registry Investigators. “Feasibility and Efficacy of Online Strategies to Recruit Parents of Children With Rheumatic Diseases for Research.ACR Open Rheumatol 4, no. 5 (May 2022): 410–16. https://doi.org/10.1002/acr2.11360.
Hausmann JS, Vizcaino-Riveros J, Marin AC, Minegishi M, Cox R, Chang M-L, et al. Feasibility and Efficacy of Online Strategies to Recruit Parents of Children With Rheumatic Diseases for Research. ACR Open Rheumatol. 2022 May;4(5):410–6.
Hausmann, Jonathan S., et al. “Feasibility and Efficacy of Online Strategies to Recruit Parents of Children With Rheumatic Diseases for Research.ACR Open Rheumatol, vol. 4, no. 5, May 2022, pp. 410–16. Pubmed, doi:10.1002/acr2.11360.
Hausmann JS, Vizcaino-Riveros J, Marin AC, Minegishi M, Cox R, Chang M-L, Schanberg LE, Natter M, Weitzman ER, CARRA Legacy Registry Investigators. Feasibility and Efficacy of Online Strategies to Recruit Parents of Children With Rheumatic Diseases for Research. ACR Open Rheumatol. 2022 May;4(5):410–416.

Published In

ACR Open Rheumatol

DOI

EISSN

2578-5745

Publication Date

May 2022

Volume

4

Issue

5

Start / End Page

410 / 416

Location

United States

Related Subject Headings

  • 3202 Clinical sciences