Children lose out in heart research
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 here.
Their study 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, which was funded by the British Heart Foundation (BHF), found that only 10 trials were conducted in the UK and none of these were large, influential ones 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.
The BHF, which is trying to raise money for research towards congenital 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 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 largescale, 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.
“We have a responsibility to provide scientific leadership and work together to conduct well designed, rigorously conducted, multi-centre clinical trials to improve the outcomes of surgery for our patients and their families.”
Professor Sir Nilesh Samani, BHF medical director, added: “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 is through clinical trials.”