A heart expert at Birmingham Children’s Hospital has led the launch of the UK’s first national study into identifying research priorities for patients diagnosed with congenital heart disease, thanks to high street fashion entrepreneur George Davies.
Twelve children in the UK are born every day with congenital heart disease (CHD), making it the most common type of birth defect.
Medical and surgical advances over the last 70 years have meant that survival rates have improved, with approximately 97% of children diagnosed with CHD now expected to reach adulthood. However children with CHD often need treatment throughout their lives, requiring specialist review during childhood and into adulthood.
To date, research into the conditions, and its impact for those living with it, has been surprisingly limited, highlighting a need to address the lack of evidence to inform clinical decision-making.
Thanks to a generous donation from George Davies, this national study aims to identify the most important research questions which could lead to the high-quality, collaborative, multi-centre trials needed to improve outcomes for patients and families.
The initial survey seeks input from patients, parents, carers and clinicians from across the UK to establish two ‘top 10’ lists of national priorities for future research in children and adults. The results will raise awareness of the most important questions with funders and allow a joined-up approach across the country to deliver national clinical trials in CHD.
Mr Davies said: “Supporting Birmingham Children’s Hospital in its research of congenital heart disease is very dear to my heart as my granddaughter, now 15 years old, received life-saving treatment at the hospital at just seven days old, after she was diagnosed with a rare heart defect. The hospital is a world-renowned centre of excellence for cardiac procedures and I’m delighted to support the team in its vision to identify the areas of research needed to enable advances in treatment and care.”
The Chairman of Birmingham Women’s and Children’s NHS Foundation Trust and its Charity, Professor Sir Bruce Keogh, a former cardiac surgeon and Medical Director of NHS England, said: “The research priorities identified through this study will be key in driving innovation to improve the treatment, outcome and quality of life for children and adults across the UK living with congenital heart disease. We’re incredibly thankful to the George Davies Charitable Trust for enabling us to complete this much-needed research.”
Leading the study, Mr Nigel Drury, Consultant in Paediatric Cardiac Surgery at Birmingham Children’s Hospital, said: “This study will bring together, for the first time, patients, their families, clinicians, researchers and other organisations to determine what are the most important questions to improve the diagnosis, treatment and outcomes in congenital heart conditions.”
Working with the James Lind Alliance, the steering committee overseeing the study also includes collaborators from Bristol Royal Hospital for Children, Great Ormond Street Hospital, Evelina London Children’s Hospital, Freeman Hospital, Newcastle, and Liverpool’s Alder Hey Children’s Hospital amongst others, along with national charities, the Children’s Heart Federation and The Somerville Foundation.
The initial survey to identify potential unanswered areas of research will close mid-September and a second survey to prioritise the uncertainties will open early next year.
Families, clinicians and others can contribute to this first survey online.