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.

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