Seek and Ye Shall Not Find (Yet): Searching Clinical Trial Registries for Trials Designed With Patients-A Call to Action

Karen Louise Woolley; J D Woolley; Mark James Woolley

doi:10.2196/72015

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Seek and Ye Shall Not Find (Yet): Searching Clinical Trial Registries for Trials Designed With Patients-A Call to Action

Journal article

Open access

Peer reviewed

Seek and Ye Shall Not Find (Yet): Searching Clinical Trial Registries for Trials Designed With Patients-A Call to Action

Karen Louise Woolley, J D Woolley and Mark James Woolley

Journal of Participatory Medicine, Vol.17, pp.1-6

2025

DOI: https://doi.org/10.2196/72015

PMCID: PMC12143847

PMID: 40446325

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Abstract

clinical trial

clinical trial registry

caregiver author

GRIPP2

patient partner

patient and public involvement

patient author

plain language summary

diversity, equity, and inclusion

Clinical trial registries were designed to help patients search for potentially suitable clinical trials. When our family faced another serious cancer diagnosis, we searched multiple international clinical trial registries. Despite increasing evidence that trials designed with patients can be better for trial participants (eg, they can have more relevant outcome measures and fewer burdens), it is currently impossible to search registries for these specific types of trials. In this Patient Perspective article, we make the first "call to action" for clinical trial registries to include (1) a filter that allows for efficient searching for clinical trials designed with patients and (2) structured information, in plain language, on how patients were involved. We propose how these two innovations could help reduce barriers to clinical trial participation. We also highlight how new regulatory and ethical guidelines are encouraging patient involvement in trial design, and we identify the benefits to many of doing so. Given the pressing need to improve clinical trial participation, we respectfully call on the clinical trial community to respond to our call to action and consider our proposed action plan. Ideally, when patients want to search for clinical trials designed with patients for patients, we should be able to find them. A plain language summary for this publication is available in the supplementary material for this paper.

Details

Title: Seek and Ye Shall Not Find (Yet): Searching Clinical Trial Registries for Trials Designed With Patients-A Call to Action
Authors: Karen Louise Woolley - University of the Sunshine Coast, Queensland, UniSC Clinical Trials Centre
J D Woolley
Mark James Woolley
Publication details: Journal of Participatory Medicine, Vol.17, pp.1-6
Publisher: JMIR Publications, Inc.
Date published: 2025
DOI: 10.2196/72015
ISSN: 2152-7202
PMID: 40446325; PMC12143847
Copyright note: © Karen Louise Woolley, JD Woolley, Mark James Woolley. Originally published in Journal of Participatory Medicine (https://jopm.jmir.org), 30.05.2025. This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in Journal of Participatory Medicine, is properly cited. The complete bibliographic information, a link to the original publication on https://jopm.jmir.org, as well as this copyright and license information must be included.
Organisation Unit: UniSC Clinical Trials Centre
Language: English
Record Identifier: 991144236802621
Output Type: Journal article

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