Below are the following organizations that help with working on research for CHD:
HeartWorks – They use cutting-edge cell-based therapies to strengthen weak hearts and move new treatments into clinical trials. HeartWorks also empowers CHD families through community support programs (One Heart) and a patient-driven database (The Co-op) to inform future research. OUR PURPOSE -To spark bold innovation that transforms our broken healthcare system into one that truly heals.OUR mission -To find cures for congenital heart defects and change lives.OUR vision -A future where people with CHD thrive with a focus on longevity, not just temporary solutions. OUR focus – Improving blood flow to the lungs for better heart function. Strengthening the heart muscle to make it more resilient. Expanding heart transplant options by restoring donor hearts. Empowering patients with a database that puts them in control of their CHD journey. heartworksinc.org
FORCE Registry (Fontan Outcomes Registry) – National research registry studying long-term outcomes for people living with Fontan circulation www.forceregistry.org
Fuel2 Study (by Mezzion) – Clinical research studying nutritional support and outcomes in children with complex congenital heart disease www.mezzion.org
Congenital Cardiac Research Collaborative (CCRC) – Multi-center consortium advancing pediatric & adult CHD outcomes. Despite roots in congenital interventional cardiology, the CCRC now boasts collaborators from all domains of pediatric cardiology, including congenital heart surgery, fetal cardiology, cardiac imaging, critical care cardiology, neurodevelopment and more. Further, while comprehensive multicenter outcomes research remains a critical mission for the collaborative, clinical innovation and real-time quality improvement are now also top priorities. ccrcresearch.org
Single Ventricle SOURCE – A groundbreaking research study building the largest genetic and clinical dataset focused on single ventricle heart defects. SOURCE collects DNA and health data from people with single ventricle CHD and their immediate family members to help scientists uncover why these defects occur, how they progress, and how to develop better treatments, and ultimately cures. Researchers anywhere can access the de‑identified dataset to accelerate discoveries. https://www.svsource.org/welcome
CH STRONG (CDC survey study)– National CDC-supported study on long-term outcomes and quality of life for adults with CHD.CH STRONG stands for Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG. CH STRONG is a project to gather information about care and quality of life from adults living with CHD. The answers to these questions will help thousands of adults and children with CHD and their families receive better care and plan for their future. chstrong.org
CH STRONG KIDS (CDC) – CHSTRONG KIDS is a survey of families of children born with heart defects. We gathered information about healthcare use, education, social experiences, and quality of life from families of children with heart defects. This information will help us identify important issues for children and adolescents with heart defects and their parents or caregivers. www.cdc.gov/heart-defects/chstrong-kids/index.html