The Heart Hive: direct-to-participant recruitment provides an effective, scalable route to identify engaged participants for cardiomyopathy research.

BackgroundDirect-to-patient platforms can overcome geographic and capacity barriers to rare-disease research, supporting inclusive and scalable recruitment. The Heart Hive was developed to enable nationwide, genomics-integrated cardiomyopathy research and rapid patient-study matching through a digital, patient-centred platform. MethodsAdults self-reporting a diagnosis, or inherited risk, of cardiomyopathy enrolled online, completed electronic consent, and provided baseline and longitudinal data for study matching. Participants in the pilot Cardiomyopathy Study were invited to return saliva kits by post for central cardiomyopathy-panel sequencing. Engagement and platform development were supported through formal patient and public involvement and partnership with Cardiomyopathy UK. Feasibility of digital recruitment, retention, and genomic validation was assessed. Results338 participants met eligibility; 227 (67%) completed baseline surveys, 195 (86%) returned saliva kits, and 174 were sequenced (98 DCM, 76 HCM). Follow-up survey completion among sequenced participants was 83%. The cohort was 57% female, median age 57.5 years, and 98% White European; 78% had never previously participated in cardiovascular research. Genetic architecture was comparable to a clinic-recruited cohort (DCM 34.7% vs 30.6%; HCM 44.7% vs 38.2%), and actionable variants were identified in 17% of DCM and 29% of HCM participants opting for personal results. ConclusionsSelf-reported recruitment accurately identifies cardiomyopathy cohorts equivalent in genetic composition to clinic-ascertained populations. The Heart Hive demonstrates a decentralised, re-contactable, and registry-ready digital model for nationwide precision-cardiology research.