ArticleOpen heart2022
Research priorities in children and adults with congenital heart disease: a James Lind Alliance Priority Setting Partnership.
Article in Open heart, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 29 papers, 1 of them a synthesis that pooled it.
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Who cites it
29 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Identifying Common Patient-Oriented Priorities for Child and Adolescent Health Research and Care: A Systematic Review of Priority Setting Partnerships.Health expectations : an international journal of public participation in health care and health policy · 2025Pooled it
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- Long-term outcomes after primary intervention for congenital aortic valve stenosis: a 30-year single-centre experience.Open heart · 2026Article
- Neuromonitoring and neuroprotection during neonatal aortic arch surgery: A United Kingdom and Ireland survey.Perfusion · 2026Article
- Cognitive-Behavioral Therapy for Health Anxiety and Heart-Focused Anxiety in Adult Congenital Heart Disease-A Single Case Experiment.Clinical case reports · 2026Article
- The Many Faces of Engagement: A Scoping Review of Paediatric Patient and Family Engagement in Clinical Care, Education and Research.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Mental Health Experiences and Needs of Women With Congenital Heart Disease in Pregnancy and Postpartum: A Qualitative Participatory Study.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- From Insight to Action: A National Patient-Centered Strategic Framework for Improving Reproductive Health Outcomes in Individuals With Congenital Heart Disease.Journal of the American Heart Association · 2026Article
- The CHI-RON Study: Using PCORnet® and Patient Engagement Strategies to Improve Diversity Among Research Participants in the Congenital Heart Initiative.Medical care · 2026Article
- Women's Cardiovascular Health and Cardiac Rehabilitation: a Priority-setting Partnership.CJC open · 2026Article
- The use of human decellularized amniotic membrane as pulmonary valve leaflets in right ventricular outflow tract reconstruction - anFrontiers in bioengineering and biotechnology · 2026Article
- Article
- Exploring parental perspectives of physiotherapy in children with congenital heart disease: a qualitative study.BMJ paediatrics open · 2025Article
- Pulmonary Valve Replacement in Adults and Adolescents With Congenital Heart Disease: A United Kingdom and Ireland Survey.Interdisciplinary cardiovascular and thoracic surgery · 2025Article
- Article
- Reflections on the James Lind Alliance priority setting partnership in congenital heart disease.Open heart · 2025Article
- Establishing a cardiology registry: navigating quality and regulatory challenges with a focus on congenital heart disease.Cardiovascular diagnosis and therapy · 2025Review
- Article
- Evaluating Long-Term Outcomes of Children Undergoing Surgical Treatment for Congenital Heart Disease for National Audit in England and Wales.Journal of the American Heart Association · 2024Article
- Improving Maternal Outcomes in Congenital Heart Disease: A National Call to Action.JACC. Advances · 2024Article
Corrections and comments
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Authors and funding
17 authors.
Funding
Abstract
objectiveTo bring together patients, parents, charities and clinicians in a Priority Setting Partnership to establish national clinical priorities for research in children and adults with congenital heart disease.
methodsThe established James Lind Alliance methodology was used to identify and prioritise research on the management of congenital heart disease, focusing on diagnosis, treatment and outcomes. An initial open survey was used to gather potential uncertainties which were filtered, categorised, converted into summary questions and checked against current evidence. In a second survey, respondents identified the unanswered questions most important to them. At two final workshops, patients, parents, charities and healthcare professionals agreed the top 10 lists of priorities for child/antenatal and adult congenital heart disease research.
results524 respondents submitted 1373 individual questions, from which 313 out of scope or duplicate questions were removed. The remaining 1060 questions were distilled into summary questions and checked against existing literature, with only three questions deemed entirely answered and removed. 250 respondents completed the child/antenatal survey (56 uncertainties) and 252 completed the adult survey (47 uncertainties). The questions ranked the highest by clinicians and non-clinicians were taken forward to consensus workshops, where two sets of top 10 research priorities were agreed.
conclusionsThrough an established and equitable process, we determined national clinical priorities for congenital heart disease research. These will be taken forward by specific working groups, a national patient and public involvement group, and through the establishment of a UK and Ireland network for collaborative, multicentre clinical trials in congenital heart disease.
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