Evidence map›Paper›PMID 35884064›Full record

ReviewChildren (Basel, Switzerland)2022

Going the Extra Mile: Why Clinical Research in Cystic Fibrosis Must Include Children.

Rebecca Dobra, Siân Bentley, Claire Edmondson, Maxine Ovens, Clare Saunders, Christopher Short, Gemma Wilson, Jane C Davies, Andrew Bush

Open access · goldAbstract readReview
In one paragraph

Review in Children (Basel, Switzerland), 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
1.1field-weighted citation impact, top 23% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

3 citing papers in PubMed, 7 citations in OpenAlex.

  1. Review
  2. Review
  3. Review
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

9 authors at 2 institutions in 1 country.

Rebecca DobraNational Heart and Lung Institute, Imperial College, London SW3 6LY, UK.
Siân BentleyNational Heart and Lung Institute, Imperial College, London SW3 6LY, UK.ORCID 0000-0001-7743-3283
Claire EdmondsonNational Heart and Lung Institute, Imperial College, London SW3 6LY, UK.
Maxine OvensPlay Team, Royal Brompton Hospital, London SW3 6NP, UK.
Clare SaundersNational Heart and Lung Institute, Imperial College, London SW3 6LY, UK.
Christopher ShortNational Heart and Lung Institute, Imperial College, London SW3 6LY, UK.
Gemma WilsonPaediatric Respiratory Medicine Department, Royal Brompton Hospital, London SW3 6NP, UK.
Jane C DaviesNational Heart and Lung Institute, Imperial College, London SW3 6LY, UK.
Andrew BushPaediatric Respiratory Medicine Department, Royal Brompton Hospital, London SW3 6NP, UK.ORCID 0000-0001-6756-9822
Royal Brompton Hospital · GBImperial College London · GB

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

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.

Indexed as

childrenclinical trialscystic fibrosisethicspatient-centred trials

Identifiers

PMID35884064
PMCPMC9323167
OpenAlexW4286005535

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.