Would you like to help set priorities for research in single ventricle heart conditions?
In conjunction with Little Hearts Matter, the Congenital Heart Research group in Birmingham are conducting a study to understand what research questions are most important for patients with a single ventricle. The first stage is an online survey of patients, their parents, family members, doctors, nurses and anyone else with an interest in single ventricle heart conditions, with just one question:
‘What questions would you like to see answered by future research for patients who have a single ventricle heart condition?’
Each participant is asked to give up to 3 questions. Responses will be classified as ‘already answered’ or ‘unanswered’ and the latter grouped into topics.
n the second stage, participants will be asked to rank the ‘unanswered’ topics in order of priority for research and for each of their 3 top-ranking topics, they will be asked to rank individual questions.
The third stage will be a one-day workshop to be held in Birmingham early next year where parents, families, healthcare professionals and other interested parties will discuss the findings to produce a list of the highest priority topics and questions. The results of this study will help researchers to prioritise their efforts to improve the lives of those with a single ventricle heart condition and their families.
We would really value your input to this study – if you’d like to take part, please follow this link: https://bistc.redcap.bham.ac.uk/surveys/?s=KKAXWMF7FK
Or scan the QR code using your smartphone.