There is little understanding of how to prevent heart defects and unfortunately, no cure. Thanks to medical advances, patients with congenital heart defects are living longer, but there is still much work to be done. It is part of our mission to continually support the research necessary to find the best treatments and work towards a cure for CHD. There are over 2 million people in the U.S. living with congenital heart defects, yet research studies are often designed by the scientists themselves. Conquering CHD actively promotes the belief that the patient should be at the center of any research study from beginning to end. We represent the patient voice in research collaboratives and individual research projects. We are committed to research that matters.
Conquering CHD Research Initiatives
This is research that matters to all of us, and it matters right now. What we build today will help for decades to come. The research we do today will be accessible to the entire congenital heart disease community.
Help us do this critical work by making a donation today. Thank you!
Additional Opportunities for Patients & Families
-
Clinical Trials at National Institutes of Health
National Institutes of Health maintains a library of clinical trials actively recruiting patients. Click here to read more about these studies for congenital heart disease patients across the lifespan.
-
Pictures of Health: Learning How Children Feel When Looking At Pictures Of Health and Medicine
Are you the parent of a child aged 6-17 years? Join our study to help us understand how kids and teens feel about health and medicine. Kids and teens will rate pictures related to health and medicine based on their emotions. This is an online study and takes about 20 minutes. Help others kids feel safe and secure when they're in the hospital.
-
Psychological Stress Survey
This brief, anonymous online survey will help to inform the delivery and prioritization of mental health and support services during and following the COVID-19 outbreak.
-
Study on Cerebrovascular Integrity in Fontan Patients
Teens and adults (13+) with a single ventricle heart disease and have gone through a Fontan completion may be eligible for a research study at Children’s Hospital Los Angeles. Help us understand how Fontan procedure may affect oxygen delivery to the brain. Click here to learn more about our study.
-
Exploring the relationship between advanced multimodal brain MRI phenotypes, genes, and cognitive outcome in adults with CHD
We are conducting a research study in the Cardiology Department at Boston Children’s Hospital for adult patients with d-transposition of the great arteries who underwent the arterial switch procedure in early infancy. The main purpose of this research study is to evaluate cognitive function and learning outcomes related to the heart condition and treatments and also how they relate to school and/or work performance, emotional health, and behavior. We will also be collecting saliva or blood for genetic study.
-
The Co-op
You are invited to learn more about a research study involving people diagnosed with Congenital Heart Defects (CHD). This study aims to create a database of members’ medical journey data to inform future clinical trials which address the needs of the members. The knowledge generated from this study will help advance the care of CHD patients.
-
Clinical Readiness Skin Punch Biopsy Sample Collection
We're advancing the future of personalized stem cell therapy for congenital heart disease - and you may have the opportunity to take part in it. If you are an adult with CHD, you may be eligible to participate in this skin sample biopsy study. The skin sample will be manufactured into stem cells and stored for future potential use. It may be months/years before you are eligible for the treatment protocol, but completion of a portion of manufacturing in advance may shorten the timeframe should you meet the criteria. (Research Site: Mayo Clinic, sponsored by HeartWorks)
-
Bioengineered Cardiac Tissue Phase I First in Human
he purpose of this study to test the feasibility and safety for autologous (from your own body) skin cells that are manufactured into stem cells of cardiac lineage to be delivered into the heart muscle to determine if those stem cells will strengthen the heart muscle and can be used as an additional treatment for the management of congenital heart disease. (Research Site: Mayo Clinic, sponsored by HeartWorks)