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
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Research Funding Opportunity
Conquering CHD aims to center the voices of patients and families in new and innovative research that will strengthen our ability to effectively diagnose, treat, and ultimately conquer CHD. Check out this page for any open grant funding cycles.
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InformCHD
In response to the pandemic, Conquering CHD collected information regarding COVID-19 and CHD utilizing our InformCHD patient database. Check back for future research opportunities.
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
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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.
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Economic burden of complex congenital heart defects
Participate in a research initiative to document the economic burden of complex congenital heart defects (CHDs) on patients, families, the health care system, and society. The report has been commissioned by Additional Ventures, a nonprofit research foundation. All of the research is being conducted by IQVIA, a company that has done many of these types of reports for other diseases. The report will be used to spread awareness about the tremendous impact of complex CHDs and to advocate for increased funding for CHD research. IQVIA is currently looking for patients and caregivers affected by one of the below diseases who would be willing to respond to a survey to share their experiences. It will require approximately 25 to 30 minutes to complete the survey. You will receive an honorarium of $25 in appreciation for your time. There are six complex CHDs being studied: Dextra-Transposition of the Great Arteries (d-GTA) Hypoplastic Left Heart Syndrome (HLHS) Pulmonary Atresia with Intact Ventricular Septum (PAIVS) Tetralogy of Fallot Tricuspid Atresia Truncus Arteriosus
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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.
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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.
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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.
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Understanding Surgical Adheasions - Patient/parent input needed!
We are working on NIH sponsored research to better understand the impact of postsurgical adhesions (AKA internal scarring) on patients, surgeons, and their families. If you have been impacted by postsurgical adhesions, we are interested in hearing your story! If you are interested in learning more email info@conqueringchd.org