The Co-Op @ HeartWorks
Overview
- Phase
- Not Applicable
- Intervention
- Not specified
- Conditions
- Congenital Heart Disease
- Sponsor
- HeartWorks, Inc.
- Enrollment
- 500
- Locations
- 1
- Primary Endpoint
- Registry of individuals with CHD to plan and recruit for future interventional trials in Congenital Heart Defects/Disease
- Status
- Recruiting
- Last Updated
- 6 months ago
Overview
Brief Summary
This protocol is a research study involving human subjects diagnosed with Congenital Heart Defects/Disease (CHD). The Co-Op @ HeartWorks is a cooperative between the research platform at HeartWorks and members of the CHD community. Individuals choosing to participate will be referred to as 'members' of the co-op. This study aims to create a database of members medical journey data to inform future clinical innovation and design of clinical trials which address the needs of the members. The knowledge generated from this study will help advance the care of CHD patients through the deliberate action of The Co-Op @ HeartWorks members. Unlike a traditional disease registry, the members of The Co-Op @ HeartWorks will actively inform and contribute to the future studies affecting their health.
Investigators
Eligibility Criteria
Inclusion Criteria
- •Adult with a congenital heart defects/disease
- •Caregiver of a minor with a congenital heart defect/disease
- •Authorized family member of a now deceased person with congenital heart defect/disease
Exclusion Criteria
- •\- Not having a congenital heart defect/disease
Outcomes
Primary Outcomes
Registry of individuals with CHD to plan and recruit for future interventional trials in Congenital Heart Defects/Disease
Time Frame: 25 years