National research study into congenital heart disease

Thanks to funding from high street fashion entrepreneur George Davies, Mr Nigel Drury, a Consultant in Paediatric Cardiac Surgery at our hospital, was able to lead the launch of the UK’s first national study into identifying research priorities for patients diagnosed with congenital heart disease (CHD). 

Twelve children in the UK are born with CHD every day, making it the most common type of birth defect.   

Medical and surgical advances over the last 70 years have meant survival rates have improved, with approximately 97% of children diagnosed with CHD now expected to reach adulthood. However these children often need treatment throughout their lives, requiring specialist review during childhood and into adulthood.

A team of UK patients, parents and healthcare professionals worked with the non-profit initiative, James Lind Alliance, to determine the set of focuses.  

Among the priorities identified was improving the outcomes of heart surgery for CHD patients and the impact of CHD on mental health, recognising the significant psychological effect of diagnosis and life-long management of the disease. 

More than 500 people responded to the initial survey and, following a prioritisation survey and two workshops, two top 10 lists of key priorities for research into child/antenatal CHD and adult CHD were agreed.  

Other areas of focus included research to enable less invasive interventions, improve CHD screenings before and after birth, using new technologies and innovation to personalise care and better outcomes, and improve quality of life for children and adults living with CHD.  

The strategy has seen the development of a new network in the UK and Ireland for studies across multiple sites, focusing on clinical trials that have the potential to change clinical practice in CHD.  

Other initiatives include the setting up of a national CHD patient and public involvement group made up of patient, parent and charity members, who will actively contribute to the development, conduct and reporting of research.