Developed by the International Rare Diseases Research Consortium (IRDiRC) Working Group on Young People Engagement, this perspective article provides practical guidance for involving children, adolescents and young adults living with rare diseases as research partners. The working group brought together young people with lived experience, patient advocates, researchers and clinical specialists to examine how engagement can be developmentally appropriate, ethically grounded and adapted to different research contexts.
Published in Frontiers in Pediatrics, the publication presents youth engagement as a continuum ranging from informing and consultation to advisory roles, co-production, shared decision-making and youth-led research. It also provides a practical checklist intended to help researchers plan inclusive, accessible and meaningful engagement across different stages of research and development.
The publication draws on examples involving the TEDDY European Network of Excellence for Paediatric Clinical Research, eYPAGnet, Fortrea, International Children’s Advisory Network (iCAN)
and the Council of Europe. These examples illustrate how young people can contribute to research design, consent and assent materials, outcome selection, health policy and the communication of research.
