The Co-Op @ HeartWorks

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.

Recruiting

Interested in participating?

Request Info

Key information

Conditions

Congenital Heart Disease Cardiovascular Abnormalities Cardiovascular Diseases Congenital Abnormalities Congenital, Hereditary, and Neonatal Diseases and Abnormalities Heart Defects, Congenital Heart Diseases Hypoplastic Left Heart Syndrome

Age range

0 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

HeartWorks, Inc.

Rochester, Minnesota, 55901, United States

Location status: Recruiting

Location contact

Clint Hagen, M.S.

CONTACT

[email protected]

(507) 577-1764

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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

Treatment and study plan

Primary outcomes

Registry of individuals with CHD to plan and recruit for future interventional trials in Congenital Heart Defects/Disease

Time frame: 25 years

Study contacts

Contact information is provided by the study sponsor or research team.

Adam Armstrong

CONTACT

[email protected]

(507) 577-1764

Sponsors and collaborators

Lead sponsor

HeartWorks, Inc.

Other

Registry information

Important dates

Study start: 2024
Primary completion: 2050
Study completion: 2050
First posted: Jun 24, 2024
Registry last updated: Oct 7, 2025

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

Published trials that share one or more normalized conditions with this study.

Recruiting