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
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Behavior and Self-Control in the Adolescent Patient with CHD
Teenagers (ages 13-19) with CHD are invited to join a study to learn more about behavior and self-control. Participants will complete 5 surveys that ask questions about risk-taking, impulsivity, sleep, and parenting styles and play two computer games. Finish the surveys and get a $20 Amazon e-card, plus a chance to win a $50 Amazon e-card. Scan the QR code on the attached flyer (or email dfuscol@udel.edu) to complete a short and confidential online screening survey.
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Neurodevelopmental Follow-up in CHD Children
University of Queensland in Australia recently launched the Neurodevelopmental Follow-Up of Children with Congenital Heart Disease (NiCHe) Study in effort to better understand the current state of neurodevelopmental follow-up care of children with congenital heart disease. Parents of children with CHD ages 0-21 are invited to participate in this research survey.
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Fontan Exercise Survey
For parents of patients or patients 15 years or older who have Fontan circulation. This study aims to determine three main things: (1) what recommendations people with a Fontan circulation hear from their pediatric cardiologists regarding physical activity, (2) what physical activity people with a Fontan circulation actually participate in, and (3) what factors may contribute to any discrepancy between (1) and (2). Our goal is to determine what factors most contribute to lack of exercise in this population to best design advocacy efforts to improve physical activity.
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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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Social Determinants of Health-Related Quality of Life
If you are the parent of a child under the age of 19 years who has Congenital Heart Disease, Down Syndrome, or both, we invite you to take part in a research project. The purpose of the study is to examine how social determinants of health influence child and caregiver health-related quality of life and family adaptation. The survey takes 30-40 minutes to complete.
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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.
Conquering CHD often collaborates with research centers on studies and surveys. If you are a researcher please submit your request here.