Abstract
STUDY OBJECTIVE: To develop a digital platform to conduct family-based, dilated cardiomyopathy (DCM) genetic research. DESIGN: Innovative approaches are needed to achieve large family enrollment targets. The DCM Project Portal, a direct-to-participant electronic recruitment, consent, and communication tool, was designed using prior experience with traditional enrollment methods, characteristics and feedback of current participants, and internet access of the US population. PARTICIPANTS: DCM patients (probands) and their family members. RESULTS: The portal was designed as a self-guided, three module (registration, eligibility, and consent) process with internally created supporting informational and messaging resources integrated throughout. The experience can be tailored to user type and the format adapted with programmatic growth. Characteristics of participants of the recently completed DCM Precision Medicine Study were assessed as an exemplary user population. A majority of the diverse (34% non-Hispanic Black (NHE-B), 9.1% Hispanic; 53.6% female) proband (n=1223) and family members (n=1781) participants aged ≥18 years reported not at all or rarely having problems learning about their health from written information (81%) and a high confidence in completing medical forms (77.2% very much or often confident). A majority of participants across age and race-ethnicity groups reported internet access, with highest rates of no reported access in those ≥77 years, NHE-B, and Hispanic, which reflects patterns similar to rates reported by the US Census Bureau as of 2021. CONCLUSIONS: Digital enrollment tools offer opportunity to improve access and efficiency. The portal is an example of a digital approach to family-based genetic research.