Today’s guest post comes to us from the National Heart, Lung, and Blood Institute (NHLBI), part of the National Institutes of Health. The NHLBI oversees several large research programs focused on heart disease in children and funds scientists at hospitals and universities throughout the United States who research the causes and problems associated with congenital heart disease. Research promotion is one of the founding priorities of the Conquering CHD. We would like to introduce you to some of NHLBI’s research efforts.
Every 15 minutes, a child in the United States is born with a congenital heart defect, the most common lethal birth defect. Today, thanks to screening, sophisticated medical care, and research advances, most of these children not only survive infancy but live to adulthood, resulting in a new set of challenges across the lifespan.
The NHLBI funds clinical research grants to help address these new challenges, as well as research on the causes of congenital heart defects. For example, NHLBI-funded research from the Pediatric Cardiac Genomics Consortium (PCGC) shed new light on causes of congenital heart disease. The results of this study will help shape the direction of future research, and the answers we have now may help change how medicine is practiced. Learn more about the PCGC’s exciting research through a conversation between Dr. Richard Lifton (Yale University), one of the PCGC investigators, and NHLBI Director Dr. Gary H. Gibbons.
NHLBI-funded programs focused on heart disease in children include:
- The Pediatric Heart Network (PHN), which started in 2001, has completed nine studies focused on improving outcomes and quality of life for children who acquire or are born with a heart condition. To learn more about the PHN, including how to participate in one of our ongoing research studies, please visit our website at www.pediatricheartnetwork.com.
- The Bench to Bassinet Program (B2B) was launched by the NHLBI in 2009 to learn more about how the heart develops and why children are born with heart problems. B2B is made up of two research groups: the Pediatric Cardiac Genomics Consortium (PCGC) and the Cardiovascular Development Consortium (CvDC). The PCGC is currently conducting a study called CHD GENES at 10 clinical centers. The study is seeking people of all ages with congenital heart disease to obtain a DNA sample and collect detailed information on how people with congenital heart disease look and act and their medical problems. To learn more about the CHD GENES study, please see our website at www.benchtobassinet.org/CHDGenes.asp.
In addition, the NHLBI is committed to helping parents and children understand the benefits and realities of taking part in clinical research. The Children and Clinical Studies website includes videos of researchers, parents and children sharing their stories about participating in research studies and about what happens during and after a study.
We hope that you will join NHLBI’s efforts to understand and treat congenital heart disease by raising awareness about the importance of research or by participating in a research study.
Kristin M. Burns, M.D.