Less than One Per Cent of UK Children Born with Congenital Heart Disease

16 January 2018        

Category: Research

Less than one per cent of UK children born with congenital heart disease are enrolled in clinical trials looking to improve treatments, according to research we've funded.

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The study, published in the European Journal of Cardio-Thoracic Surgery and led by the University of Birmingham and Birmingham Children’s Hospital, is the first systematic review of its kind into clinical trials in children’s heart surgery.

The researchers analysed all 333 clinical trials looking at surgery for congenital heart disease - heart conditions that develop in the womb - published worldwide between 1st January 2000 and 31st August 2016.

Only 10 clinical trials (three per cent) were conducted in the UK in this time, none of which were phase III trials - large, influential trials needed to change treatments or guidelines.

Less than one per cent of children enrolled

The researchers also found that only 431 out of the estimated 65,000 children (less than one per cent) who underwent heart surgery in the UK in this timeframe were enrolled in a clinical trial. In comparison, 70 per cent of children suffering from cancer are enrolled in phase III clinical trials.

The startling research is being highlighted as part of the BHF’s Christmas Appeal, which aims to raise £750,000 for life saving research towards congenital heart disease, which affects around 4,000 UK children each year. Although recent advances mean most children diagnosed with a congenital heart defect grow up to become adults, many face the prospect of multiple surgical operations, and sadly around 400 children each year still die before they reach school age.

Research into the rarest conditions

Poor recruitment was not able to explain the lack of clinical trials, with over 87 per cent of trials able to recruit sufficient numbers of children. However, there are many different types of congenital heart diseases and it can be difficult for single hospitals to see enough of a particular type of the disease to carry out a meaningful trial.

Researchers suggest that one solution to this issue would be to establish a congenital heart disease research network which would allow researchers in all centres in the UK to collaborate and carry out research into the rarest types of congenital heart disease.

We can and should do better

Professor Sir Nilesh Samani, Medical Director at the British Heart Foundation, said:

“For many children with congenital heart disease, the only treatment available is surgery. It can be a difficult choice for parents to agree to their child participating in research. However, the only way we can improve the range and quality of treatments for these children is through clinical trials.

“This study shows that we can and should do better if we are to improve the treatment and outcomes of children with congenital heart disease.”

Money raised through the BHF’s Christmas Appeal will help fund the vital research that helps to keep tiny hearts beating.