There is little understanding of how to prevent heart defects and unfortunately, no cure, either. Thanks to medical advances, children 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. However, research studies are often designed by the scientists themselves. PCHA actively promotes the idea 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.
Congenital Heart Futures Reauthorization Act (CHFRA)
The Federal Government is the largest funder of CHD research. PCHA advocates fought for the passage of the CHFRA, which became law in December of 2018. This legislation authorizes $50 million for CHD research and data collection through the Centers for Disease Control and Prevention (CDC).
Bench to Bassinet
The Bench to Bassinet Program is a major effort launched by the National Heart, Lung, and Blood Institute to learn more about how the heart develops and why children are born with heart problems. This information will be used to develop new ways to help infants, children, teenagers, and adults born with heart disease.
Pediatric Heart Network
The Pediatric Heart Network (PHN) is a group of hospitals in the United States and Canada that conducts research studies in children with Congenital Heart Disease or Acquired Heart Disease. It is supported, in part, by the National Heart Lung and Blood Institute (NHLBI), a program of the National Institutes of Health (NIH).
Congressionally Directed Medical Research Program
The Congressionally Directed Medical Research Program (PRMRP), supports research across the full range of science and medicine, with an underlying goal of enhancing the health, care, and well-being of military Service members, Veterans, retirees, and their family members. Part of the Department of Defense (DoD), this program funds specific medical conditions including congenital heart disease.
The Children's Heart Foundation
The CHF's mission is to fund the most promising research to advance the diagnosis, treatment, and prevention of CHDs.
Cardiac Networks United
Cardiac Networks United aims to align and integrate efforts across networks in pediatric and congenital heart disease to foster novel science and accelerate translation of discovery to improvements in care. The overall goal of our organization is to improve outcomes for children and families impacted by pediatric and congenital cardiovascular disease, and to maximize return on investment and sustainability for organizations funding and participating in research and quality improvement work.
National Pediatric Cardiology Quality Improvement Collaborative
Clinicians, researchers, and parents, from across medical institutions collaborate to ensure that families of children, who receive a diagnosis of Hypoplastic Left Heart Syndrome (HLHS), and other univentricular hearts, have hope.
Alliance for Adult Research in Congenital Cardiology
AARCC is a network of Clinical Researchers with interest in Adults with Congenital Heart Disease. We seek to better understand and treat the problems that such individuals face long after birth.
Joshua was born, at 36 weeks and 4 days, on November 25, 2017, at 7:55pm. He was delivered early due to his dropping heart rate during my routine check ups. Once Joshua was here, he was 3 pounds and 6.1 oz, and went straight to the Edward NICU. While he was there, it was discovered that he...Full Story>