ArticleACR open rheumatology2022
Feasibility and Efficacy of Online Strategies to Recruit Parents of Children With Rheumatic Diseases for Research.
Article in ACR open rheumatology, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.
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The trial behind it
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Who cites it
8 citing papers in PubMed, 10 citations in OpenAlex.
- A randomized controlled trial evaluating the effects of social networking on chronic disease management in rheumatoid arthritis.Seminars in arthritis and rheumatism · 2022Trial
- Feeding difficulties in children with esophageal atresia: A parent-reported multicenter study.Journal of pediatric gastroenterology and nutrition · 2026Article
- Understanding caregiver vaccine hesitancy and experiences in children with paediatric rheumatic diseases: results from the C19-GRA Global Pediatric Survey.EULAR rheumatology open · 2026Article
- Exploring the role of digital tools in rare disease management: An interview-based study.Journal of genetic counseling · 2025Article
- "You Take This Day by Day, Come What May": A Qualitative Study of the Psychosocial Impacts of Living with Duchenne Muscular Dystrophy.Advances in therapy · 2024Article
- "Online survey of COVID-19 immunization and infection in patients with systemic juvenile idiopathic arthritis and adult-onset still's disease."Pediatric rheumatology online journal · 2023Article
- Early impacts of the COVID-19 pandemic on children with pediatric rheumatic diseases.European journal of rheumatology · 2022Article
- Comparison of Web-Based Advertising and a Social Media Platform as Recruitment Tools for Underserved and Hard-to-Reach Populations in Rheumatology Clinical Research.ACR open rheumatology · 2022Article
Corrections and comments
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Authors and funding
10 authors at 3 institutions in 1 country.
Funding
Abstract
objectiveWe 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.
methodsWe 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.
resultsIn 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).
conclusionRecruitment 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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Registered trials
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