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Title The effect of pediatric research agendas on the involvement of children in research in clinical trials in the Netherlands
Keywords ethics pediatrics patient related research
Researchers Prof. dr. mr. A.A.E. Verhagen
M.L. Luchtenberg
L. Postma
E.L.M. Maeckelberghe
Nature of the research Questionnaire study
Fields of study pediatrics Patient Related Research
Background / introduction
A growing trend in research is the involvement of children as co- or peer researchers. This is known as Patient and Public Involvement (PPI), defined by INVOLVE as: ‘research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them Nowadays, many medical research agendas are being set up in so-called Priority Setting Partnerships (PSPs) to uncover research questions relevant to patients and experts. The involvement of children in research PSPs is limited.

In this pilot project we will research whether children are more often involved in trials that are based on pediatric research agendas than trials that are not based on pediatric research agendas. Also, we will explore if children are involved in pediatric research agendas in The Netherlands
Research question / problem definition
Are children more often involved in trials that are based on pediatric research agendas as compared to trials that are not based on pediatric research agendas?
The student will be involved in this questionnaire study and will be responsible for selecting the clinical trials (using Nederlands Trial Register), contacting the researchers and sending them the questionnaires. The student can choose his/her own research question within this research project. Possible subquestions are: How are children involved in Dutch trials? Or what are the attitudes of researchers who involved children in their trial? This project will start in September 2021.
1. Postma L, Luchtenberg ML, Verhagen AAE, Maeckelberghe ELM. The attitudes of healthy children and researchers towards the challenges of involving children in research: an exploratory study. Res Involv Engagem. 2021;7(1):1–10.
2. Luchtenberg ML, Maeckelberghe ELM, Verhagen AE. “I actually felt like I was a researcher myself.” On involving children in the analysis of qualitative paediatric research in the Netherlands. BMJ Open. 2020;10(8):e034433.
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