ArticleJournal of participatory medicine2025
Engagement Methods in Brain Tumor Genomic Research: Multimethod Comparative Study.
Article in Journal of participatory medicine, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.
What it found
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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.
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.
Who cites it
2 citing papers in PubMed.
- A Telemedicine App for Nonrigid Facial Rehabilitation Training Enhanced by Efficient Fully Convolutional Neural Network With Residual Network (EffiFCNN-ResNet) to Improve Accessibility for Patients With Nasopharyngeal Carcinoma Cancer: Randomized Controlled Trial.JMIR mHealth and uHealth · 2026Trial
- Community perspectives on the return of research results and ownership of data and specimens for brain tumor genomic research.SSM. Qualitative research in health · 2026Article
Corrections and comments
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Authors and funding
20 authors.
Funding
Abstract
backgroundEngaging patients, care partners, and others in research planning and conduct is increasingly valued. However, identifying the most effective ways to do so remains a challenge.
objectiveThis study aimed to evaluate participation and participant experience using 3 engagement methods with the Low-Grade Glioma (LGG) Registry's Optimizing Engagement in Discovery of Molecular Evolution of Low-Grade Glioma (OPTIMUM) project, part of the National Cancer Institute's Participant Engagement and Cancer Genome Sequencing Network.
methodsWe evaluated LGG Registry research advisory council (RAC) meetings, Twitter (now known as X), and Facebook discussions across 4 engagement activities with each group. Researchers recorded discussions and performed qualitative content analysis to evaluate differences in the nature of interactions and recommendations for promoting trust and participation in LGG Registry research. Participants completed experience surveys after engagements 1 and 4 (Public and Patient Engagement Evaluation Tool, Research Engagement Survey Tool, Trust in Medical Researchers Scale, and Patient Engagement in Research Scale).
resultsRAC engagements involved 25 unique participants representing diverse backgrounds; tweet chats and Facebook discussions had 197 and 133 participants, respectively. Qualitative findings highlighted differences in the nature of interactions (eg, communication styles and types of information shared) across groups, but there was general agreement around recommendations for promoting participation in genomic research. Postengagement surveys (n=52 in ipostengagement activity 1; n=40 in postengagement activity 4) showed patterns suggesting a more positive experience overall for the RAC.
conclusionsAdvisory councils and social media engagement methods have advantages and disadvantages. Advisory councils provide consistent interactions with the same individuals and clear procedures. Despite theoretically broader reach, social media engagement may yield less diverse perspectives. The LGG Registry aims to use RAC and social media engagement methods to promote diverse perspectives and maintain consistent interactions.
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Registered trials
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.