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. It is a collaboration between the Children’s Heart Federation, The Somerville Foundation, the British Congenital Cardiac Association, and the Society for Cardiothoracic Surgery, and is being hosted by the Institute for Cardiovascular Sciences at the University of Birmingham. It is funded by George Davies, the high street fashion entrepreneur behind brands such as Next, Per Una, and George at Asda, through a generous donation from the George Davies Charitable Trust to the Birmingham Children’s Hospital Charity.
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.
We are not looking at areas which fall outside of these, such as the causes of congenital heart defects, acquired heart disease in those without a congenital heart defect, or aspects of congenital disorders that do not affect the heart.
The initial survey closed after receiving 524 responses. The questions raised have been processed to identify those that are unanswered and generate summary questions. These have been divided into two separate prioritisation surveys which are now open: the Paediatric/fetal prioritisation survey and the Adult prioritisation survey. These links will take you to an external site, however when using/storing your data, the University of Birmingham will be bound by our own policies and agreements, as detailed below.
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This PSP will generate two Top 10 lists, one fetal/paediatric and one adult. These will be key in developing a national strategy for congenital heart disease research to address the issues which matter most, 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.