Literature DB >> 29457267

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

Segolene Gaillard1,2,3, Salma Malik1,2,3,4, Jenny Preston5, Begonya Nafria Escalera6,7, Pamela Dicks8, Nathalie Touil1,3, Sandrine Mardirossian1,3, Joana Claverol-Torres6,9, Behrouz Kassaï1,2,3.   

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.
© 2018 Société Française de Pharmacologie et de Thérapeutique.

Entities:  

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

Mesh:

Year:  2018        PMID: 29457267     DOI: 10.1111/fcp.12360

Source DB:  PubMed          Journal:  Fundam Clin Pharmacol        ISSN: 0767-3981            Impact factor:   2.748


  10 in total

1.  Role of Patients and Parents in Pediatric Drug Development.

Authors:  Vivian W L Tsang; Leanne West; Christine Woods; Chester J Koh; Susan McCune; Theresa Mullin; Sharon R Smith; Segolene Gaillard; Joana Claverol; Begonya Nafria; Jennifer Preston; Pamela Dicks; Charles Thompson
Journal:  Ther Innov Regul Sci       Date:  2019-01-20       Impact factor: 1.778

2.  The attitudes of healthy children and researchers towards the challenges of involving children in research: an exploratory study.

Authors:  Laura Postma; Malou L Luchtenberg; A A Eduard Verhagen; Els L M Maeckelberghe
Journal:  Res Involv Engagem       Date:  2021-05-14

3.  Children and young people's contributions to public involvement and engagement activities in health-related research: A scoping review.

Authors:  Alison Rouncefield-Swales; Jane Harris; Bernie Carter; Lucy Bray; Toni Bewley; Rachael Martin
Journal:  PLoS One       Date:  2021-06-09       Impact factor: 3.240

4.  Co-producing research with youth: The NeurOx young people's advisory group model.

Authors:  Gabriela Pavarini; Jessica Lorimer; Arianna Manzini; Ed Goundrey-Smith; Ilina Singh
Journal:  Health Expect       Date:  2019-05-16       Impact factor: 3.318

5.  How is the Pharmaceutical Industry Structured to Optimize Pediatric Drug Development? Existing Pediatric Structure Models and Proposed Recommendations for Structural Enhancement.

Authors:  Thomas Severin; Solange Corriol-Rohou; Christina Bucci-Rechtweg; Kristina An Haack; Sabine Fuerst-Recktenwald; Pirkko Lepola; Ensio Norjavaara; Martine Dehlinger-Kremer; Sebastian Haertter; S Y Amy Cheung
Journal:  Ther Innov Regul Sci       Date:  2020-02-06       Impact factor: 1.778

6.  Facilitators and barriers to the training and maintenance of young persons' advisory groups (YPAGs).

Authors:  V W L Tsang; S Y Chew; A K Junker
Journal:  Int J Pediatr Adolesc Med       Date:  2019-11-08

7.  Improving communication of the concept of 'treat-to target' in childhood lupus: a public and patient (PPI) engagement project involving children and young people.

Authors:  R S Elliott; E Taylor; J Ainsworth; J Preston; E M D S Smith
Journal:  BMC Rheumatol       Date:  2022-10-15

8.  Children's Preferences for Oral Dosage Forms and Their Involvement in Formulation Research via EPTRI (European Paediatric Translational Research Infrastructure).

Authors:  Elisa Alessandrini; Francis Brako; Mariagiovanna Scarpa; Mariangela Lupo; Donato Bonifazi; Valeria Pignataro; Maria Cavallo; Ornela Cullufe; Cristina Enache; Begonya Nafria; Joana Claverol; Leen De Taeye; Eric Vermeulen; Jennifer Preston; Catherine Tuleu
Journal:  Pharmaceutics       Date:  2021-05-15       Impact factor: 6.321

9.  'I actually felt like I was a researcher myself.' On involving children in the analysis of qualitative paediatric research in the Netherlands.

Authors:  Malou L Luchtenberg; Els L M Maeckelberghe; Aa Eduard Verhagen
Journal:  BMJ Open       Date:  2020-08-30       Impact factor: 2.692

10.  Laying the groundwork: Building relationships for public and patient involvement in pre-clinical paediatric research.

Authors:  Wendy Costello; Emma Dorris
Journal:  Health Expect       Date:  2019-10-18       Impact factor: 3.377

  10 in total

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