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
-
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.
-
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.
-
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.
-
Research Priorities for Patients Affected by Coronary Anomalies - Priority Setting Partnership Survey
The Coronary Anomalies Research Education (CARE) Collaborative is a group of clinicians, investigators, and patients/families from University of Texas at Austin, Boston Children’s Hospital, Children’s Hospital of Philadelphia, and Texas Children’s Hospital studying anomalous aortic origin of a coronary artery (AAOCA). There are many unknowns associated with AAOCA, including the risk of sudden cardiac death for individual patients and the effectiveness of different therapies. These uncertainties result in anxiety for patients and families. Yet, to date there has been no patient or family engagement to define research priorities. The CARE Collaborative is funded by a Patient Centered Outcomes Research Institute (PCORI) Engagement Capacity Building Award. The goal of the award is to ensure that future research related to AAOCA is focused on the topics and outcomes that matter most to patients and their families. We believe that research priorities should be driven by direct patient and family input. The information gathered will allow us to develop a patient-centered research agenda for AAOCA. We would like to invite you to participate in our survey, which seeks to understand what unanswered questions you may have about AAOCA. The survey can be accessed here and is very brief - no longer than 5-10 minutes.
Conquering CHD often collaborates with research centers on studies and surveys. If you are a researcher please submit your request here.