A cooperative initiative for individuals with congenital heart disease

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

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.

Why it matters

Who can join: the full rules

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 it's running

• HeartWorks, Inc.
  Rochester, Minnesota, United States Recruiting

Study contacts

• Study coordinator: Adam Armstrong
• Email: adam@webuildhearts.org
• Phone: (507) 577-1764

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

• Adapting and testing PEN-Plus in Zambian primary care

  Aiming to see if the PEN-Plus package can be adapted and used in two Zambian hospitals to better manage chronic diseases like heart disease, diabetes, hypertension, and sickle cell in primary care.

  Recruiting Centre for Infectious Disease Research in Zambia · Lusaka, Lusaka Province · NCT07753681

• Wireless NIRS Sensor Use in the NICU for Monitoring on Neonates

  A wireless NIRS sensor is tested on infants in the NICU to see how well it stays on and how it notes brain signals when used alongside standard wired sensors.

  Recruiting McGill University Health Centre/Research Institute of the McGill University Health Centre · Montreal, Quebec · NCT07732244

• Screening for lipid disorders in children and teens with chronic diseases to flag cardiovascular risk

  This study tests a blood test and a questionnaire to screen children and teens with chronic conditions for lipid metabolism disorders and familial hyperlipidemia.

  Recruiting Jena University Hospital · Jena · NCT07716488

• Prehabilitation before heart surgery for adults with congenital heart disease

  This study is testing whether a tailored, supervised exercise program before heart surgery helps adults with congenital heart disease perform better and improve fitness.

  Recruiting Liverpool Heart and Chest Hospital NHS Foundation Trust · Liverpool · NCT07700459

• Accessible care model comparing nurse-led versus physician-led transition education for teens and young adults with congenital heart disease

  This project will test whether an accessible care model and nurse-led versus physician-led transition education helps teens and young adults (ages 12–26) with congenital heart disease move successfully from pediatric to adult heart care.

  Recruiting University of Wisconsin, Madison · Madison, Wisconsin · NCT07559253

• Surgical techniques and outcomes across the lifespan in congenital heart disease in China

  See which surgical factors and care patterns affect recovery after heart surgery for people with complex congenital heart disease in China.

  Recruiting China National Center for Cardiovascular Diseases · Beijing · NCT07524998

How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.