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Fundam Clin Pharmacol. 2018 Aug;32(4):357-362. doi: 10.1111/fcp.12360. Epub 2018 May 8.

Involving children and young people in clinical research through the forum of a European Young Persons' Advisory Group: needs and challenges.

Author information

1
Hospices Civils de Lyon, EPICIME-CIC 1407 de Lyon, Inserm, Service de Pharmacologie Clinique, 69677, Bron, France.
2
Laboratoire de Biométrie et Biologie Evolutive, Service de Pharmacologie Clinique, Université de Lyon, CNRS, UMR 5558, Université Lyon 1, 69622, Villeurbanne, France.
3
RIPPS (Réseau d'investigations pédiatriques des produits de santé)-KIDS France Groupement Hospitalier Est - Bâtiment "Les Tilleuls", 59 Boulevard Pinel, 69677, Bron, France.
4
European Clinical Research Infrastructure Network (ECRIN), Paris, France.
5
Institute in the Park, National Institute for Health Research (NIHR) Alder Hey Clinical Research Facility, Eaton Road, Liverpool, L12 2AP, UK.
6
Institut de Recerca Sant Joan de Déu, Santa Rosa 39-57, 08950, Esplugues de Llobregat, Spain.
7
Innovation and Research Department, Hospital Sant Joan de Déu Pg, Sant Joan de Déu, 2, 08950, Esplugues de Llobregat, Barcelona, Spain.
8
NHS NRS Children's Research Network, Summerfield House, 2 Eday Road, Aberdeen, AB15 6RE, UK.
9
Clinical Research Unit, Fundació Sant Joan de Déu, C/Santa Rosa 39-57, 08950, Esplugues de Llobregat, Barcelona, Spain.

Abstract

Children and young people are seen as fundamental to the design and delivery of clinical research as active and reflective participants. In Europe, involvement of children and young people in clinical research is promoted extensively in order to engage young people in research as partners and to give them a voice to raise their own issues or opinions and for their involvement in planning and decision making in addition to learning research skills. Children and young people can be trained in clinical research through participation in young person advisory groups (YPAGs). Members of YPAGs assist other children and young people to learn about clinical research and share their experience and point of view with researchers, thereby possibly influencing all phases of research including the development and prioritization of research questions, design and methods, recruitment plans, and strategies for results dissemination. In the long term, the expansion of YPAGs in Europe will serve as a driving force for refining pediatric clinical research. It will help in a better definition of research projects according to the patients' needs. Furthermore, direct engagement of children and young people in research will be favorable to both researchers and young people.

KEYWORDS:

adolescent; advisory groups; children; clinical research; patient and public involvement; pediatrics; young person

PMID:
29457267
DOI:
10.1111/fcp.12360
[Indexed for MEDLINE]

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