Patient-Reported Outcomes Among Adults With Congenital Heart Disease in the Congenital Heart Initiative Registry.

ABSTRACT:

Importance

In the US, there are more than 1.5 million adults living with congenital heart disease (CHD). The Congenital Heart Initiative (CHI) is a digital, online, patient-empowered registry that was created to advance multicenter research and improve clinical care by gathering patient-reported outcomes (PROs) in adults with CHD.

Objective

To report the initial findings of the PROs for adults with CHD from the first 3 years of the CHI.

Design, setting, and participants

The CHI was launched nationally on December 7, 2020, as an observational cohort (survey) study. Data were collected virtually through December 31, 2023, and stored on Health Insurance Portability and Accountability Act-compliant cloud-based servers with restricted access. Adults with CHD were recruited

SUBMITTER: Leezer S 

PROVIDER: S-EPMC11581669 | biostudies-literature | 2024 Oct

REPOSITORIES: biostudies-literature