The Council of Europe together with the TEDDY Network developed the survey ‘Participation of children in the decision-making process on matters regarding their health’ composed by 8 questions and several sub-questions.
EPTRI Central Hub supported the initiative providing its feedback on the Italian legislation related to the children participation in decision making process in healthcare and research.
EPTRI provided information on the activities undertaken aimed at increasing children participation in decision making process within biomedical research. Amongst the others, EPTRI has developed a toolkit for patients aimed at educating patients and families about their potential involvement in basic and translational paediatric research; the EPTRI survey to study the preferences for oral drug formulations in children was reviewed and translated by Young Persons Advisory Groups (YPAGs) of Albania, Barcelona and Bari in order to include a child-friendly language and layout in the questionnaire.
The main aims of the Survey were to:
- identify national provisions (implementation of children right to be heard).
- explore initiative/practices aimed at increasing awareness of children and at including them in decision process in different therapeutic area/research.
- explore eventual specific initiatives in the field of emerging technologies (such as gene editing, advanced therapies… information society technologies, nanotechnology,)
- detail eventual initiatives in COVID 19 pandemic situation in terms of prevention, healthcare and research.
The results of the Survey will be available in the following weeks.