European YPAG Network

The European Young Persons Advisory Group Network (eYPAGnet) provides a structured approach for involving children, young people and families in paediatric clinical research through Young Persons Advisory Groups (YPAGs). It supports researchers, academic institutions and other stakeholders in implementing meaningful Patient and Public Involvement and Engagement (PPIE) throughout the research lifecycle, including during clinical trial protocol development.

For protocol development, eYPAGnet facilitates access to young patient and family perspectives on key aspects of clinical research design. Young people involved through YPAGs can provide feedback on research questions, trial procedures, feasibility of participation, visit schedules, recruitment strategies, relevant outcomes, patient-reported outcomes, formulations, and study documentation. They can also contribute to the development and review of patient-facing materials, including participant information sheets, assent and consent documents, patient diaries and digital tools.

This resource is particularly relevant for paediatric rare disease clinical trials, where challenges such as limited patient populations, complex disease pathways, family involvement and participant burden require careful consideration during protocol design. Early engagement with children, young people and families can help identify barriers to participation, improve the acceptability of study procedures and ensure that trial outcomes reflect issues that are meaningful to patients and caregivers.

Researchers developing paediatric rare disease protocols can use eYPAGnet services to establish structured collaboration with young patient experts and incorporate their perspectives alongside scientific, clinical, statistical and regulatory considerations. The resource complements broader patient engagement frameworks by providing practical expertise specifically adapted to the needs and rights of children and young people involved in research.