Supporting Participant Engagement in Cancer Genomics Research in Rare Cancers: A Qualitative Study of Patients, Caregivers, and Advocates.

ABSTRACT: IntroductionThe purpose of this study was to identify patterns and themes that support participant engagement in patient-partnered cancer genomics research.MethodsThe Osteosarcoma (OS) and Leiomyosarcoma (LMS) Projects of Count Me In allow any patient with OS and LMS in the US and Canada to contribute their health information, tumor samples, and lived experience to an aggregated, public research database. We conducted in-depth interviews with research partners, including patients, caregivers, and advocates, who were purposefully sampled to ensure inclusion of racial and ethnic minorities, those with less than college education, and adolescents (age 12-17). Coding and analysis were conducted by the research team using NVivo to identify themes that support engagement.ResultsTen patients, ten

SUBMITTER: Venkataraman V 

PROVIDER: S-EPMC12304653 | biostudies-literature | 2025 Jan-Dec

REPOSITORIES: biostudies-literature