Repository logo
  • Log In
    Log in via Symplectic to deposit your publication(s).
Repository logo
  • Communities & Collections
  • Research Outputs
  • Statistics
  • Log In
    Log in via Symplectic to deposit your publication(s).
  1. Home
  2. Faculty of Medicine
  3. Faculty of Medicine
  4. Going the extra mile: why clinical research in cystic fibrosis must include children
 
  • Details
Going the extra mile: why clinical research in cystic fibrosis must include children
File(s)
Going the Extra Mile Why Clinical Research in Cystic Fibrosis Must Include Children.pdf (527.95 KB)
Published version
Author(s)
Dobra, Rebecca
Bentley, Sian
Edmondson, Claire
Ovens, Maxine
Saunders, Clare
more
Type
Journal Article
Abstract
This is an exciting time for research and novel drug development in cystic fibrosis. However, rarely has the adage, “Children are not just little adults” been more relevant. This article is divided into two main sections. In the first, we explore why it is important to involve children in research. We discuss the potential benefits of understanding a disease and its treatment in children, and we highlight that children have the same legal and ethical right to evidence-based therapy as adults. Additionally, we discuss why extrapolation from adults may be inappropriate, for example, medication pharmacokinetics may be different in children, and there may be unpredictable adverse effects. In the second part, we discuss how to involve children and their families in research. We outline the importance and the complexities of selecting appropriate outcome measures, and we discuss the role co-design may have in improving the involvement of children. We highlight the importance of appropriate staffing and resourcing, and we outline some of the common challenges and possible solutions, including practical tips on obtaining consent/assent in children and adolescents. We conclude that it is unethical to simply rely on extrapolation from adult studies because research in young children is challenging and that research should be seen as a normal part of the paediatric therapeutic journey.
Date Issued
2022-07
Date Acceptance
2022-07-14
Citation
Children, 2022, 9 (7)
URI
http://hdl.handle.net/10044/1/107770
URL
https://www.mdpi.com/2227-9067/9/7/1080
DOI
https://www.dx.doi.org/10.3390/children9071080
ISSN
2227-9067
Publisher
MDPI
Journal / Book Title
Children
Volume
9
Issue
7
Copyright Statement
© 2022 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
License URL
https://creativecommons.org/licenses/by/4.0/
Identifier
https://www.webofscience.com/api/gateway?GWVersion=2&SrcApp=PARTNER_APP&SrcAuth=LinksAMR&KeyUT=WOS:000831521900001&DestLinkType=FullRecord&DestApp=ALL_WOS&UsrCustomerID=a2bf6146997ec60c407a63945d4e92bb
Subjects
CANCER
CFTR
children
clinical trials
cystic fibrosis
DISEASE
ethics
INFANTS
INFECTION
IVACAFTOR
Life Sciences & Biomedicine
LUNG CLEARANCE INDEX
patient-centred trials
Pediatrics
PRESCHOOL-CHILDREN
Science & Technology
SPIROMETRY
TRIALS
Publication Status
Published
Article Number
1080
Date Publish Online
2022-07-20
About
Spiral Depositing with Spiral Publishing with Spiral Symplectic
Contact us
Open access team Report an issue
Other Services
Scholarly Communications Library Services
logo

Imperial College London

South Kensington Campus

London SW7 2AZ, UK

tel: +44 (0)20 7589 5111

Accessibility Modern slavery statement Cookie Policy

Built with DSpace-CRIS software - Extension maintained and optimized by 4Science

  • Cookie settings
  • Privacy policy
  • End User Agreement
  • Send Feedback