The Co-Op @ HeartWorks

Status

Recruiting

Phases

Unknown

Study type

Observational

Source

ClinicalTrials.gov

Registry ID

NCT06469918

Enrollment

500

Registered

2024-06-24

Start date

2024-01-24

Completion date

2050-01-01

Last updated

2025-10-07

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Congenital Heart Disease

Keywords

HLHS, congenital heart defect, CHD, Hypoplastic left heart syndrome

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.

Interventions

None listed

Study design

Observational model

CASE_ONLY

Time perspective

PROSPECTIVE

Eligibility

Sex/Gender

ALL

Age

0 Years to No maximum

Healthy volunteers

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

Design outcomes

Primary

Measure	Time frame
Registry of individuals with CHD to plan and recruit for future interventional trials in Congenital Heart Defects/Disease	25 years

Countries

United States

Contacts

Primary ContactAdam Armstrong

adam@webuildhearts.org(507) 577-1764

Outcome results