Evidence map›Paper›PMID 39676124›Full record

ArticlePediatric blood & cancer2025

Partnership With Patient Advocacy Organizations Improves Research Recruitment.

Lori Wiener, Kimberly Buff, Kimberly Canter, Emily Pariseau, Michele A Scialla, Victoria Sardi Brown, Anne E Kazak

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Pediatric blood & cancer, 2025. 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
–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

3 citing papers in PubMed.

  1. Article
  2. Article
  3. 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

7 authors.

Lori WienerCenter for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA.ORCID https://orcid.org/0000-0002-9573-8870
Kimberly BuffMomcology, Saint Paul, Minnesota, USA.
Kimberly CanterNemours Children's Health, Wilmington, Delaware, USA.ORCID https://orcid.org/0000-0003-0811-4961
Emily PariseauNemours Children's Health, Wilmington, Delaware, USA.
Michele A SciallaNemours Children's Health, Wilmington, Delaware, USA.ORCID https://orcid.org/0000-0001-7933-0675
Victoria Sardi BrownMattie Miracle Cancer Foundation, Arlington, Virginia, USA.
Anne E KazakNemours Children's Health, Wilmington, Delaware, USA.ORCID https://orcid.org/0000-0003-0553-0855

Funding

Andrew McDonough B+ FoundationIntramural NIH HHS Z99 CA999999Intramural Program of the National Cancer Institute, Center for Cancer ResearchNIH
6 · The paper itself

Abstract

Incorporating and elevating the voices of patients and families is of utmost importance in pediatric psychosocial research. While recognized as a priority, this practice is not commonplace, and specific guidance regarding best practices and procedures is largely absent. This paper describes partnering equitably with pediatric oncology patient advocacy groups to conduct the Implementing the Standards Together: Engaging Parents and Providers in Psychosocial Care (iSTEPPP) study. The partnership was critical for all steps of the research process, including study development, refinement of the survey instrument, and recruitment procedures. We describe our overall approach, providing specific illustrative examples and highlighting opportunities for future growth.

Indexed as

Biomedical ResearchNeoplasmsPatient AdvocacyPatient SelectionChildHumansParentsadvocacychildhood cancerengagementequitable carefamily caregiverspartnershippatient advocacy organizationspsychosocialrecruitmentstandards of care

Identifiers

PMID39676124
PMCPMC12403193

What OpenQuestion holds

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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.