A cooperative initiative for individuals with congenital heart disease
The Co-Op @ HeartWorks
HeartWorks, Inc. · NCT06469918
This study is trying to gather information from people with congenital heart defects, especially those with Hypoplastic Left Heart Syndrome, to help improve their care and treatment options in the future.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 500 (estimated) |
| Ages | 0 Years and up |
| Sex | All |
| Sponsor | HeartWorks, Inc. (other) |
| Locations | 1 site (Rochester, Minnesota) |
| Trial ID | NCT06469918 on ClinicalTrials.gov |
What this trial studies
The Co-Op @ HeartWorks is an observational research initiative focused on individuals diagnosed with congenital heart defects, particularly those with Hypoplastic Left Heart Syndrome (HLHS). This program aims to create a comprehensive database of medical journey data contributed by members of the congenital heart disease community. Participants, referred to as 'members', will actively engage in informing and shaping future clinical innovations and trials based on their experiences and needs. This collaborative approach seeks to enhance the care and treatment options available for patients with congenital heart disease.
Who should consider this trial
Good fit: Ideal candidates include adults with congenital heart defects, caregivers of minors with such conditions, and authorized family members of deceased individuals who had congenital heart disease.
Not a fit: Patients without a congenital heart defect or disease will not benefit from this study.
Why it matters
Potential benefit: If successful, this initiative could lead to improved clinical trials and treatment options tailored to the specific needs of congenital heart disease patients.
How similar studies have performed: While this approach is innovative in its cooperative model, similar studies have shown success in utilizing patient data to inform clinical practices.
Eligibility criteria
Show full inclusion / exclusion 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
Where this trial is running
Rochester, Minnesota
- HeartWorks, Inc. — Rochester, Minnesota, United States (RECRUITING)
Study contacts
- Study coordinator: Adam Armstrong
- Email: adam@webuildhearts.org
- Phone: (507) 577-1764
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions: Congenital Heart Disease, HLHS, congenital heart defect, CHD, Hypoplastic left heart syndrome