The Congenital Heart Disease Priority Setting Partnership is bringing together parents, adult patients, charities, and clinicians from across both the spectrum of congenital heart disease and the UK to identify priorities for research.
The scope of this PSP is focused on the management of congenital heart disease throughout life, including prior to birth, in three areas of the patient and families experience:
- Diagnosis, during pregnancy or after birth.
- Treatment: medical therapy, catheter intervention, surgery including mechanical support & transplantation, lifestyle, or psychosocial intervention.
- Outcomes of the conditions and/or treatments and the impact on patients and their families, including the physical, psychological, and social effects of living with congenital heart disease.
The aim of this project is to identify those unanswered research questions that are most important to patients, parents, charities and healthcare professionals in the UK, so a national strategy can be developed for congenital heart disease research. The PSP will generate two Top 10 lists, one fetal/paediatric and one adult and will guide the scope and design of future clinical trials aimed at improving the clinical care and day-to-day lives of children and adults born with congenital heart disease.
The initial survey seeks to identify evidence uncertainties through a consultation process with all stakeholders, and asks one simple question: What questions would you like to see answered by research, relating to the diagnosis, treatment, or outcomes of congenital heart disease?
The survey in available online here and in PDF format which can be printed and completed