ArticlePediatrics2014
Social media methods for studying rare diseases.
Article in Pediatrics, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 54 papers, 2 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
54 citing papers in PubMed, 2 syntheses or guidelines pooled it, 126 citations in OpenAlex.
- Opportunities and pitfalls of social media research in rare genetic diseases: a systematic review.Genetics in medicine : official journal of the American College of Medical Genetics · 2021Pooled it
- The Use of Facebook in Recruiting Participants for Health Research Purposes: A Systematic Review.Journal of medical Internet research · 2017Pooled it
- Optimizing recruitment in rare disease research: a cross-sectional online study evaluating sampling strategies for hard-to-reach populations.Orphanet journal of rare diseases · 2026Article
- Proof-of-Concept of Online-Only Enrollment for Collecting Longitudinal Patient-Reported Outcomes in Young Individuals With Congenital Heart Disease.CJC pediatric and congenital heart disease · 2025Article
- Exploring the role of digital tools in rare disease management: An interview-based study.Journal of genetic counseling · 2025Article
- Rare disease narratives on social media: A content analysis.Genetics in medicine open · 2025Article
- Navigating health policies and programs in India: exploring opportunities to improve rare disease management and orphan drug research.Orphanet journal of rare diseases · 2024Review
- Myasthenia Gravis: utilising cross-platform quantitative content analysis to uncover and validate unmet needs.Frontiers in neurology · 2024Article
- IMPOWER: a national patient-generated registry for intestinal malrotation exploring diagnosis, treatment, and surgical outcomes.Orphanet journal of rare diseases · 2023Article
- Parent-reported phenotype data on chromosome 6 aberrations collected via an online questionnaire: data consistency and data availability.Orphanet journal of rare diseases · 2023Article
- Early cochlear implantation in prelingual profound hearing loss in Italy, analyzed by means of a social media survey.Frontiers in pediatrics · 2023Article
- Facebook recruitment for research of children and parents during the COVID-19 pandemic.Applied nursing research : ANR · 2022Article
- Feasibility and Efficacy of Online Strategies to Recruit Parents of Children With Rheumatic Diseases for Research.ACR open rheumatology · 2022Article
- State of the science and future research directions in palliative and end-of-life care in paediatric cardiology: a report from the Harvard Radcliffe Accelerator Workshop.Cardiology in the young · 2022Article
- The Promises and Perils of Social Media for Pediatric Rheumatology.Rheumatic diseases clinics of North America · 2022Review
- Facebook Support Groups for Pediatric Rare Diseases: Cross-Sectional Study to Investigate Opportunities, Limitations, and Privacy Concerns.JMIR pediatrics and parenting · 2022Article
- Social media: frenemy of public health?Public health nutrition · 2022Article
- The opportunities and challenges of social media in interstitial lung disease: a viewpoint.Respiratory research · 2021Review
- Parental perception of FIRES outcomes, emotional states, and social media usage.Epilepsia open · 2021Article
- Lupus Cohorts.Rheumatic diseases clinics of North America · 2021Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
10 authors at 2 institutions in 1 country.
Funding
Abstract
For pediatric rare diseases, the number of patients available to support traditional research methods is often inadequate. However, patients who have similar diseases cluster "virtually" online via social media. This study aimed to (1) determine whether patients who have the rare diseases Fontan-associated protein losing enteropathy (PLE) and plastic bronchitis (PB) would participate in online research, and (2) explore response patterns to examine social media's role in participation compared with other referral modalities. A novel, internet-based survey querying details of potential pathogenesis, course, and treatment of PLE and PB was created. The study was available online via web and Facebook portals for 1 year. Apart from 2 study-initiated posts on patient-run Facebook pages at the study initiation, all recruitment was driven by study respondents only. Response patterns and referral sources were tracked. A total of 671 respondents with a Fontan palliation completed a valid survey, including 76 who had PLE and 46 who had PB. Responses over time demonstrated periodic, marked increases as new online populations of Fontan patients were reached. Of the responses, 574 (86%) were from the United States and 97 (14%) were international. The leading referral sources were Facebook, internet forums, and traditional websites. Overall, social media outlets referred 84% of all responses, making it the dominant modality for recruiting the largest reported contemporary cohort of Fontan patients and patients who have PLE and PB. The methodology and response patterns from this study can be used to design research applications for other rare diseases.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.