The DCM Project Portal: A direct-to-participant platform of The DCM Research Project.

ABSTRACT:

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 pro

SUBMITTER: Jordan ES 

PROVIDER: S-EPMC10861184 | biostudies-literature | 2024 Feb

REPOSITORIES: biostudies-literature