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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.
Conditions:
🦠 Congenital Heart Disease
🗓️ Study Start (Actual) 24 January 2024
🗓️ Primary Completion (Estimated) 1 January 2050
✅ Study Completion (Estimated) 1 January 2050
👥 Enrollment (Estimated) 500
🔬 Study Type OBSERVATIONAL
📊 Phase N/A
Locations:
📍 Rochester, Minnesota, United States

📋 Eligibility Criteria

Description

    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
Ages Eligible for Study: 0 Years to N/A (CHILD, ADULT, OLDER_ADULT)
Sexes Eligible for Study: ALL
Accepts Healthy Volunteers: No

🗓️ Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

  • First Submitted 14 June 2024
  • First Submitted that Met QC Criteria 17 June 2024
  • First Posted 24 June 2024

Study Record Updates

  • Last Update Submitted that Met QC Criteria 24 June 2024
  • Last Update Posted 26 June 2024
  • Last Verified June 2024
I'm interested ...!!