Research priorities in single-ventricle heart conditions: a United Kingdom national study.
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 up to three questions they would like answered for 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 the final list of research priorities.


RESULTS
A total of 128 respondents posed 344 research questions, of which 271 were classified as unanswered, and after removing duplicates, 204 questions remained, which were divided into 20 categories. In the second survey, 56 (49.1%) respondents successfully ranked categories and questions. A total of 39 participants attended the workshop, drawing up a list of 30 research priorities across nine priority categories. The nine priority categories are: Associated co-morbidities; Brain &amp; neurodevelopment; Exercise; Fontan failure; Heart function; Living with a single ventricle heart condition; Management of the well-functioning Fontan circulation; Surgery &amp; perioperative care; and Transplantation, mechanical support &amp; 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 United Kingdom and elsewhere to address the most important questions and improve outcomes in these rare but high-impact CHDs.
['Drury|Nigel E|NE|https://orcid.org/0000-0001-9012-6683', 'Stoll|Victoria M|VM|', 'Bond|Chris J|CJ|', 'Patel|Akshay J|AJ|', 'Hutchinson|Suzie|S|', 'Clift|Paul F|PF|']
D000293:Adolescent D000328:Adult D000368:Aged D035843:Biomedical Research D006348:Cardiac Surgical Procedures D003695:Delivery of Health Care D005260:Female D006330:Heart Defects, Congenital D006352:Heart Ventricles D006801:Humans D008297:Male D008875:Middle Aged D009017:Morbidity D011300:Preoperative Care D012189:Retrospective Studies D011795:Surveys and Questionnaires D006113:United Kingdom D055815:Young Adult
research priorities Single-ventricle heart conditions Fontan circulation patient involvement