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Published on: January 12, 2018
The importance of patient engagement when promoting age-inclusive research
Lydia E Roberts1,2, James O Burton1,3, Manish D Sinha4,5
1Department of Cardiovascular Sciences, University of Leicester, Leicester, UK.
Insights
Children and young people face barriers in clinical research, leading to unequal access to treatments. Involving them directly ensures research meets their unique health needs, promoting equitable care.
Area of Science:
- Clinical Research
- Paediatric Health
- Health Equity
Background:
- Children and young people are often excluded from clinical trials.
- This exclusion can lead to delayed access to essential medications and treatments.
- Evidence from adult trials may not be suitable for paediatric populations.
Discussion:
- Directly involving children and young people in research design is crucial.
- Service evaluation of paediatric haemodialysis practices highlights inclusion challenges.
- The 'NightLife study' in adult haemodialysis centres serves as a case example.
Key Insights:
- Exclusion from trials limits equitable access to disease-modifying medications for youth.
- Adult data extrapolation poses risks for paediatric treatment efficacy and safety.
- Age-inclusive approaches are vital for advancing paediatric clinical research.
Outlook:
- Age-inclusive strategies are reshaping the paediatric clinical research landscape.
- Research initiatives prioritizing equity and inclusivity are essential.
- Future research must actively incorporate the perspectives of young people.
Abstract:
Children and young people continue to face many barriers to actively participating in clinical research, despite the same research questions being just as applicable to them as their adult counterparts. Exclusion of paediatric populations from drug trials can result in a lack of timely, equitable access to disease modifying medications. In other circumstances, there is the risk of extrapolating evidence from adult populations that may not meet the needs of a young population. In this brief report, we highlight the importance of directly involving children and young people when evaluating inclusion in research studies. This is illustrated by our service evaluation investigating current paediatric haemodialysis practices and opinions, and how these relate to a UK based clinical trial called the 'NightLife study' that is being conducted in adult haemodialysis centres. We discuss how age-inclusive approaches are aiming to change the paediatric clinical research landscape going forward, using research initiatives built on the principles of equity and inclusivity.
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