Community Voices in Research (CVR): A lived experience expert-centred approach to advance the future of inheritable bleeding disorders

Abstract

Web-based registries are essential tools for gathering patient-reported information for research purposes. The National Bleeding Disorders Foundation recognised and responded to the imperative to actively include persons with inheritable bleeding disorders and their immediate family members, as Lived Experience Experts (LEEs), in all aspects of the research process. Consequently, Community Voices in Research (CVR) was developed and launched with the aims of creating a LEE-centred approach to complement existing research efforts, highlighting mechanisms to actively incorporate them, and using the data collected to identify relevant gaps in knowledge.