Evidence map›Paper›PMID 39600960›Full record

ArticleFrontiers in pediatrics2024

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

Barbara E Bierer, Elisa Koppelman, Alysha K Croker, Sharareh Hosseinzadeh, Collin Hovinga, Steven Joffe, Gianna McMillan, Robert Nelson, Christina Bucci-Rechtweg

Abstract read
In one paragraph

Article in Frontiers in pediatrics, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed
–field-weighted citation impact
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

2 citing papers in PubMed.

  1. Article
  2. Article
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.

Barbara E BiererDivision 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.
Elisa KoppelmanDivision 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.
Alysha K CrokerHealth Canada, Centre for Policy, Pediatrics and International Collaboration at Health Canada, Ottawa, ON, Canada.
Sharareh HosseinzadehGlobal Head Clinical Patient Engagement, Chief Medical Office, Novartis Pharma, Toronto, ON, Canada.
Collin HovingaCritical Path Institute (C-Path), Tuscon, AZ, United States.
Steven JoffeDepartment of Medical Ethics and Health Policy, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, United States.
Gianna McMillanIndependent Patient & Participant Advocate, Los Angeles, CA, United States.
Robert NelsonJohnson & Johnson, Pediatric Drug Development, Spring House, PA, United States.
Christina Bucci-RechtwegMaternal Health and Pediatric Regulatory Policy, Novartis Pharmaceuticals Corporation, East Hanover, NJ, United States.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

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.

Indexed as

paediatricspatient engagementpatient perspectiveproduct developmentregulatory approval

Identifiers

PMID39600960
PMCPMC11588471

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.