Engaging children and adolescents in the design and conduct of paediatric research.

Autor:	Bierer BE; Division of Global Health Equity, Department of Medicine, Multi-Regional Clinical Trials Center of Brigham and Women's Hospital and Harvard, Brigham and Women's Hospital, Boston, MA, United States.; Department of Medicine, Harvard Medical School and Brigham and Women's Hospital, Boston, MA, United States., Koppelman E; Division of Global Health Equity, Department of Medicine, Multi-Regional Clinical Trials Center of Brigham and Women's Hospital and Harvard, Brigham and Women's Hospital, Boston, MA, United States., Croker AK; Health Canada, Centre for Policy, Pediatrics and International Collaboration at Health Canada, Ottawa, ON, Canada., Hosseinzadeh S; Global Head Clinical Patient Engagement, Chief Medical Office, Novartis Pharma, Toronto, ON, Canada., Hovinga C; Critical Path Institute (C-Path), Tuscon, AZ, United States., Joffe S; Department of Medical Ethics and Health Policy, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, United States., McMillan G; Independent Patient & Participant Advocate, Los Angeles, CA, United States., Nelson R; Johnson & Johnson, Pediatric Drug Development, Spring House, PA, United States., Bucci-Rechtweg C; Maternal Health and Pediatric Regulatory Policy, Novartis Pharmaceuticals Corporation, East Hanover, NJ, United States.
Jazyk:	angličtina
Zdroj:	Frontiers in pediatrics [Front Pediatr] 2024 Nov 12; Vol. 12, pp. 1481754. Date of Electronic Publication: 2024 Nov 12 (Print Publication: 2024).
DOI:	10.3389/fped.2024.1481754
Abstrakt:	The importance of patient engagement in product development and clinical research is widely acknowledged. In pediatrics, parents and guardians are often vocal advocates for their children in the process, but investigators and sponsors rarely directly solicit children's or adolescents' perspectives in clinical research planning or as patient partners during the conduct of research. Here, we provide compelling reasons and recommendations for investigators and sponsors to systematically engage young people in the design, conduct, and review of research, and the premise that input will be incorporated as a routine expectation. We consider the theoretical, ethical, and practical implications of this approach. Competing Interests: SJ is a paid member of a data monitoring committee for CSL Behring. SH was formerly the Global Head of Scientific Patient Engagement and stockholder of Novartis AG. CB-R is a full time employee and stockholder of Novartis AG. The remaining authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest. (© 2024 Bierer, Koppelman, Croker, Hosseinzadeh, Hovinga, Joffe, McMillan, Nelson and Bucci-Rechtweg.)
Databáze:	MEDLINE
Externí odkaz:	Zobrazit plný text záznamu