Heart-defect children ‘get a poor deal’

Boys get their skates on Experts want more research

The boy choristers of Winchester Cathedral Choir skate on the cathedral’s ice rink yesterday – which will be open until January 7. Children who are born with heart problems in the UK are being “let down” by a lack of research into new treatments which would potentially improve care, experts have warned.

Researchers have found that less than 1% of British youngsters with congenital heart problems are involved in clinical trials.

Experts from the University of Birmingham and Birmingham Children’s Hospital found that between 2000 and 2016, only 3% of clinical trials into children’s heart surgery were conducted in the UK.

Their study, published in the European Journal of Cardio-Thoracic Surgery, analysed all 333 clinical trials looking at surgery for congenital heart disease, heart conditions that develop in the womb, published worldwide between January 2000 and August 2016.

The research, funded by the British Heart Foundation (BHF), found that only 10 trials were conducted in the UK and none of these were large, influential trials which are needed to change treatments or guidelines.

Only 431 out of the estimated 65,000 children who underwent heart surgery in the UK in this time frame were enrolled in a clinical trial.

This worked 0.7%.

The BHF, which is trying to raise money for research towards congenital

“This study shows that we can and should do better”

out to be heart disease as part of its Christmas appeal, said that by comparison, 70% of children suffering from cancer were enrolled in phase III clinical trials.

The charity said that congenital heart problems affected around 4,000 children in the UK each year.

Around 400 children with congenital heart defects died each year before they reached school age, the charity added.

Researchers have suggested that a congenital heart disease research network should be established.

Lead author Nigel Drury, of the Institute of Cardiovascular Sciences at the University of Birmingham and consultant in paediatric cardiac surgery at Birmingham Children’s Hospital, said: “The surgery available for children with heart problems has improved dramatically over the past 20 years.

“However, by not carrying out large-scale, cutting-edge clinical trials to continually improve surgeries, we’re letting down the thousands of children born in the UK each year with heart problems.”

Professor Sir Nilesh Samani, BHF medical director, added: “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.”

To find out more about the BHF’s Christmas appeal to raise money for research visit christmas.bhf.org.uk