Clinical research into children’s illnesses ‘lagging behind’

By The Press Association14th May 2015News EnglandChildren, Health and Wellbeing, News England, Research

More clinical research involving children and young people is essential in improving the understanding of childhood disease, health experts have said.

Evidence on many areas of children’s illnesses and treatments remains limited because of a lack of research specifically around children, they argue.

Concern about the ethics of involving children and young people and the fact that the starting point for most research is among adults means research into children is often left “lagging behind”, the Nuffield Council on Bioethics said.

The independent body has released a report after conducting a two-year inquiry, involving more than 500 professionals, children and young people, and parents.

They said that, for instance, many medicines prescribed to children had not been developed specifically for the age group, meaning that doctors had to use their expertise to adapt adult doses.

It could also be difficult to get youngsters to take some medicines, as they found them unpalatable and spat them out.

“If we could actually get better ways for children to take the medicines it would really help with the day to day running of the children’s wards,” Dr Helen Sammons, a paediatrician and member of the council’s working party, said.

“We need to have the evidence there and be absolutely sure that we’re doing the right thing for children and young people, and that’s where the research is key.

“We may have the evidence for adults, but it takes so much time sometimes for that to roll down into children.”

She said further research may mean that more medicines not currently available for children over-the-counter, could be.

Children aged 16 or over can give their own consent, with parents having to give it on their behalf if they are underage.

“As soon as children are able to express their opinions or give their views we should respect them as individuals by listening to them,” Dr Sammons added.

“Parents will always be concerned with their child’s well-being, and there may be times when their concerns override a child’s wishes.

“However, in most cases, researchers should seek to get the agreement of both children and their parents to take part.”

Professor Neena Modi, president of the Royal College of Paediatrics and Child Health, said: “This is an important report. Child health research is crucial because it generates evidence and only with good evidence can we safeguard the safety of patients receiving medical treatments and improve their outcomes.

“However, in the UK less than 5% of public and third-sector biomedical research funding is directed at children. Less than 5% of registered studies involve children and less than 5% of neonatal medications have been evaluated in newborn populations

“The danger of not developing the evidence base is far greater than the risks of recruiting infants, children and young people to well-run carefully-regulated clinical trials and research programmes.

“For too long, child health research has been the poor relation of adult research. The whole research community must now get behind the Nuffield recommendations, and collectively push for child health research to be a key priority for the NHS.”

Professor Paul Workman, chief executive of the Institute of Cancer Research, London, said: “The case for the development of safer and more effective targeted drugs for cancer in children is overwhelmingly clear and without question of great urgency.

“This report identifies some of the major hurdles that we face, not least the loophole in EU legislation that allows drug companies to apply for a waiver to avoid testing potentially promising drugs in children.

“I hope that implementing the findings of this timely report can help us to deliver the same kind of step change in the way children’s cancers are treated that we have seen for adult cancer, using drugs targeted at specific molecular mechanisms.”