Study objective: To develop a digital platform to conduct family-based, dilated cardiomyopathy (DCM) genetic research.
Design: The DCM Project Portal, a direct-to-participant electronic recruitment, consent, and communication tool, was designed using prior experience with traditional enrollment methods and characteristics and feedback of current participants.
Participants: DCM patients (probands) and their family members enrolled from June 7, 2016 to March 15, 2020 at 25 US advanced heart failure programs.
Results: The portal was designed as a self-guided, three module (registration, eligibility, and consent) process with supporting informational and messaging resources integrated throughout. The experience is tailored to user type and the format adaptable 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 member (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), supporting a self-guided model. A majority of participants across age and race-ethnicity groups reported internet access, with highest rates of no reported access in those ≥77 years (31.9 %), NHE-B (25.2 %), and Hispanic (22.9 %), a similar pattern to those reported by the US Census Bureau as of 2021.
Conclusions: The portal is an example of a digital approach to family-based genetic research that offers opportunity to improve access and efficiency of research operations.
Keywords: Dilated cardiomyopathy; Family members; Research design.