The Co-Op @ HeartWorks

Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
Age0+
SponsorHeartWorks, Inc.

About this trial

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.

Eligibility criteria

This trial does not accept healthy volunteers

Qualifiers

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

Disqualifiers

None

Trial population

Human subjects with congenital heart disease

Trial design

Design model

Case-only

Time perspective

Prospective

Treatments tested in this trial

Not listed

Trial groups

No trial groups listed

Trial outcomes

Primary outcomes

1

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

Time frame
25 years

Secondary outcomes

Other outcomes

Sponsors and contacts

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