Research priorities in single-ventricle heart conditions: a United Kingdom national study

Nigel Drury, Victoria Stoll, Chris Bond, Akshay Patel, Suzie Hutchinson, Paul Clift

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Objective: To bring together stakeholders in the United Kingdom to establish national priorities for research in single ventricle heart conditions.

Methods: This study comprised two surveys and a workshop. The initial public online survey asked respondents for up to 3 questions they would like answered by research. Responses were classified as: unanswered, already answered, or unable to be answered by scientific research. In the follow-up survey, unanswered questions were divided into categories and respondents were asked to rank categories and questions by priority. A stakeholder workshop attended by patients, parents, healthcare professionals, researchers and charities was held to determine a final list of research priorities.

Results: 128 respondents posed 344 research questions, of which 271 were classified as unanswered, and after removing duplicates, 204 questions remained, divided into 20 categories. 56 (49.1%) respondents successfully ranked categories and questions in the second survey. 39 participants attended the workshop, drawing up a list of 30 research priorities across 9 priority categories: Associated co-morbidities, Brain & neurodevelopment, Exercise, Fontan failure, Heart function, Living with a single ventricle heart condition, Management of the well-functioning Fontan circulation, Surgery & perioperative care, and Transplantation, mechanical support & novel therapies.

Conclusions: Through a multi-stage process, we engaged a wide range of interested parties to establish a list of research priorities in single ventricle heart conditions. This provides a platform for clinicians, researchers and funders in the UK and elsewhere to address the most important questions and improve outcomes in these rare but high-impact congenital heart defects.
Original languageEnglish
Number of pages7
JournalCardiology in the Young
Early online date21 Dec 2018
Publication statusE-pub ahead of print - 21 Dec 2018


  • Single-ventricle heart conditions
  • Fontan circulation
  • research priorities
  • patient involvement


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