DIPEx Websites Provide Boost for Paediatric Trials
New internet resources supported by the UK’s National Institute for Health Research (NIHR) aim to explain paediatric trials for children and their parents, emphasise informed consent, and inform clinical research professionals about what really matters to young trial participants.
The websites have been launched as two new sections of the experiential health websites www.healthtalkonline.org and www.youthhealthtalk.org, which are run by the Oxford-based charity, DIPEx. The charity works with the Health Experiences Research Group at the University of Oxford to disseminate research into individual experiences of health and illness.
The new sections, Clinical trials: Parents’ experiences and Clinical trials in children and young people, feature interviews with parents and children addressing how they found out about the clinical trial, why they decided to take part (or, in some cases, not to take part), the information they needed and were given about the clinical trials, and how they felt about the experience.
Currently Attract Two Million Unique Visitors Each Year
www.healthtalkonline.org and www.youthhealthtalk.org were set up around 10 years ago and currently attract over two million unique visitors each year.
The sites feature video and audio clips from interviews by Oxford University’s Health Experience Research Group, involving over 2,000 people talking about their experience of over 70 different health conditions.
Research for the scheme was conducted by the Health Experiences Research Group, which interviewed 29 parents and 32 children aged 10 years and over who had taken part, or been invited to participate in, a clinical research trial.
The website resources are intended to clarify the goals, circumstances and responsibilities of clinical trials that, as the National Institute for Health Research notes, are gaining drive on the back of the European Union’s regulation on paediatric medicines yet remain a source of public unease.
50% Of Medicines Haven’t Been Properly Tested For Children
“There are real concerns about undertaking research on children, a feeling that they shouldn’t be experimented upon,” observed Dr William van’t Hoff, co-director of the NIHR Medicines for Children Research Network.
Clinical research has also been “slow to recognise that children are not small adults in the way their bodies respond to medication, how they absorb and metabolise it as well as the long-term effects”, van’t Hoff added.
As a result, “half the medicines that we use in children haven’t been properly tested for this purpose and we rely on data from adult experience”.
Chief medical officer and chief scientific advisor at the Department of Health, Professor Dame Sally Davies, commented that the new sections of the DIPEx websites would help families who were thinking about participating in trials to make more informed choices.
“Well-designed trials are a vital contribution to advancing medical knowledge in order to improve treatment, care and quality of life for patients” she added.
They would also provide “a valuable teaching aid for professionals by offering insights in what really matters to parents and young people when they are invited to participate in a trial”.
Informed consent, though, is paramount, van’t Hoff emphasised. “It’s absolutely vital that the children and their parents receive and understand the information about the trial – with an on-going process of agreement to participation that continues through the study.”
In addition, he said, every child “must be given the opportunity to withdraw at any stage and that is something that every researcher must understand and respect”.