There is little understanding of how to prevent heart defects and unfortunately, no cure either. 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. 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.
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.
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.
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.
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.
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).
The Care of Children With Congenital Heart Disease in Their Primary Medical Home
As it appeared in Pediatrics, the official journal of the American Academy of Pediatrics.
Clinical Trials Across the Lifespan
A complete listing of clinical trials on congenital heart disease across the lifespan.
Clinical Trials - Adolescents
A complete listing of clinical trials on congenital heart disease in adolescent patients.
Clinical Trials - Adults
A complete listing of clinical trials on congenital heart disease in adults.
Clinical Trials - Pediatrics
A complete listing of clinical trials on congenital heart disease in pediatric patients.
Children and Clinical Studies
The importance of, and considerations of, participating in pediatric clinical trials.
Grace was born on March 7, 2017. At birth, to her parents heartbreak, she was diagnosed with complete atrioventricular canal defect (AVSD), as well as trisomy 21. She had open heart surgery on August 7, 2017 at just 5 months old. The first year of her life was hard on her family, especially the first...Full Story>