JMIR Publications

ABSTRACT

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, more relevant outcome measures, 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 respectively 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 (Supplementary File 1).