RECRUITING

The Co-Op @ HeartWorks

Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

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.

Official Title

The Co-Op @ HeartWorks

Quick Facts

Study Start:2024-01-24
Study Completion:2050-01-01
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT06469918

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Ages Eligible for Study:0 Years
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:No
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. * Adult with a congenital heart defects/disease
  2. * Caregiver of a minor with a congenital heart defect/disease
  3. * Authorized family member of a now deceased person with congenital heart defect/disease
  1. Pregnancy or breastfeeding
  2. Severe psychiatric disorders
  3. Active substance abuse
  4. Unstable medical conditions
  5. Inability to comply with study requirements

Contacts and Locations

Study Contact

Clint Hagen, M.S.
CONTACT
(507) 577-1764
clint@webuildhearts.org

Study Locations (Sites)

HeartWorks, Inc.
Rochester, Minnesota, 55901
United States

Collaborators and Investigators

Sponsor: HeartWorks, Inc.

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

Study Start Date2024-01-24
Study Completion Date2050-01-01

Study Record Updates

Study Start Date2024-01-24
Study Completion Date2050-01-01

Terms related to this study

Keywords Provided by Researchers

  • HLHS
  • congenital heart defect
  • CHD
  • Hypoplastic left heart syndrome

Additional Relevant MeSH Terms

  • Congenital Heart Disease