ReviewCJC pediatric and congenital heart disease2023
The Role of Congenital Heart Disease Patient Organizations in Advocacy, Resources, and Support Across the Lifespan.
Review in CJC pediatric and congenital heart disease, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
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
6 citing papers in PubMed, 8 citations in OpenAlex.
- Global inequity in pediatric and congenital heart care-is it economics or inertia?Indian journal of thoracic and cardiovascular surgery · 2025Review
- Pediatric and Congenital Cardiac Services: An Innovative and Empowering Approach to Global Training and Equitable Care.Journal of the American Heart Association · 2025Review
- Initiating a Fetal Cardiac Program from Scratch in Low- and Middle-Income Countries: Structure, Challenges, and Hopes for Solutions.Pediatric cardiology · 2025Review
- Socioeconomic Status and Access to Care for Pediatric and Adult Congenital Heart Disease in Universal Health Coverage Models.Journal of cardiovascular development and disease · 2024Review
- Developing the WE BEAT Well-Being Education Programme to foster resilience and build connection in paediatric heart disease.Cardiology in the young · 2024Article
- Challenges and Opportunities for Patients With Tetralogy of Fallot Across the Lifespan.CJC pediatric and congenital heart disease · 2023Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Congenital heart disease patient organizations, comprising experts with lived experience, and their families and supporters, have become an essential voice for patient advocacy, resources, and support. Thanks largely to the Internet, these organizations are growing in number worldwide. Their common voice can be used to influence research, be the catalyst for advocacy efforts for new programmes and supports, and connect patients and providers in endeavours beyond the clinical setting. The result has become more active engagement with how policy decisions, research directions, and laws are decided that will shape patients' lives. From advocating for much-needed mental health support, policies to combat discrimination and the lack of access to support services, and partnerships with clinicians and others to develop educational resources and tools, congenital heart disease patient organizations are having a considerable impact on patient lives and ultimately patient outcomes.
Identifiers
What OpenQuestion holds
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.