Children and Young People specialty profile
Why you should deliver children and young people's research in the UK
Ensuring that children have the best access to healthcare is paramount. It is through research and innovation that all children receive the best treatments, have access to the best facilities and that we improve the quality of life for our patients.
The strength of our collaborative Children’s Specialty combined with leadership from paediatric sub-specialists ensures that we deliver a world-class portfolio of commercial and non-commercial research.
The National Institute for Health Research (NIHR) Clinical Research Network (CRN) provides researchers with the practical support they need to make research happen in the NHS and the wider health and social care environment. As well as providing research delivery staff, we also bring together communities of clinical practice to provide national networks of research expertise. The Children’s Specialty is one of 30 such communities and is made up of leading research-interested clinicians and practitioners at both national and local levels. Our job is to ensure that the children’s studies we support are delivered to time and target. We can provide:
We have a strong UK-wide network of clinical academics experienced in leading and delivering research studies for children and young people. Our collaborative working relationship with the Royal College of Paediatrics and Child Health (RCPCH) ensures that we develop and deliver research on key areas of need in child health. Sub-specialist research is supported by 14 Children’s Clinical Studies Groups (CSGs). The CSGs are national, multidisciplinary and include key opinion leaders, researchers, parents and carers, nurses, other allied health professionals, and charity representatives. The CSGs work towards delivering high quality research in specialist children’s care, for both common and rare diseases.
Access to patients
Since 2015, over 8,300 participants have been recruited into commercial children’s studies across a broad range of paediatric sub-specialties. In 2018/19, the Children’s Specialty recruited over 127,000 participants into 607 studies, also achieving a first global participant.
The Children’s Specialty consistently meets recruitment targets, with 78 per cent of commercial and 85 per cent of non commercial studies delivered on time and to target in 2018/19. We actively manage study performance through direct involvement of our National Specialty Lead, specific members of the specialty group, CSGs and the NIHR CRN industry team.
We facilitate discussions with sponsors and clinical studies groups, providing early feedback and suggesting strategies for site selection and improved recruitment. We also contribute to national services including early feedback, site intelligence and site identification. In addition, we work closely with the Generation R Young Persons’ Advisory Group to encourage the involvement of children and young people in research (generationr.org.uk).
Our local teams of research staff are specifically trained to support and deliver research for children and young people. This often takes place in dedicated children’s clinical research facilities across the country ensuring a safe and supportive environment for children and their families.
We work collaboratively with other specialties to ensure that children across the country have access to a broad range of research studies. Our Young Persons’ Advisory Group is influential in helping to improve the design and delivery of children’s clinical research studies supported by the RCPCH Children’s Research Charter.
The UK Child Health Research Collaboration (UK CHRC) has recently been established to bring together leaders from the NIHR Children’s Specialty, the RCPCH, national charities and the life sciences sector. It aims to advance paediatric science and improve the health and wellbeing of children, working towards collaborative solutions to generic problems in child health research and to identify funding to achieve this.
The UK CHRC is hosted by the RCPCH and supported by the Wellcome Trust and Medical Research Council. The NIHR Children’s Specialty also works directly with the NIHR Children and Young People MedTech Cooperative to collaboratively support and influence the development of child health technology. Our strong links with the network of Paediatric Clinical Research Facilities ensures the coordinated delivery of high quality research for children across the country.
This study compared the efficacy and safety of phenytoin and levetiracetam for 2nd line management of paediatric convulsive status epilepticus. EcLiPSE was an open-label, randomised clinical trial undertaken at 31 UK emergency departments at secondary and tertiary care centres. The NIHR supported the recruitment of 326 participants across 26 sites in England on time and to target. Running from 2015-2018, the study suggested that levetiracetam could be considered for 2nd line management of paediatric convulsive status epilepticus. EcLiPSE was funded by the NIHR Health Technology Assessment programme.
The ARTEMIS study (AR101 Trial in Europe Measuring Oral Immunotherapy Success in Peanut Allergic Children) aimed to demonstrate the efficacy and safety of AR101 in peanut allergic children in Europe. The UK recruited the first patient and was also the top recruiter, with 59 participants included. Recruitment was to time and target. The study ran from 2017–2019.