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Research
Families are often looking for what research is being done on CHD. Many critical congenital defects cannot be completely repaired, so families want to know what treatment options are on the horizon that may help their child. Sometimes, research can be hard to find. Here are just some of the places to look.

The Children’s Heart Foundation is the only organization MLH is aware of that funds exclusively CHD research. At that site, families can look at what specific research projects they have funded. In addition, there is information for researchers to apply for a research grant on this site.

The American Heart Association also funds CHD research. In fact, they are the second largest funder of CHD research after the federal government. You can read about AHA research milestones to learn more about their main accomplishments. Much of their research is for heart disease in general, but obviously, much of it still can have an impact on those living with CHD.

The Federal government is the largest funder of CHD research through the National Institutes of Health, particularly the National Heart, Lung and Blood Institute (NHLBI). Much of their research funding goes to universities around the nation to fund projects they are working on.

The Joint Council on Congenital Heart Disease (JCCHD) is currently conducting a quality improvement initiative to improve survival and optimize quality of life in infants between discharge after Stage 1 Norwood and admission for Bidirectional Glenn. Many organizations have come together to work on this project in order to help children with Hypoplastic Left Heart Syndrome (HLHS).

Children’s Hospitals and universities around the nation are actively working on research projects to help children and adults with CHD. They are too numerous to list here, but MLH members suggest looking at specific children’s hospital websites to learn more about what they are doing. There are some very exciting projects ongoing.

Clinical Trials
The National Heart, Lung and Blood institute (NHLBI) has created an award-winning website called Children in Clinical Studies that gives parents wonderful and easy-to-use information about the importance of research in kids, what happens during a study, terminology, and resources.

In addition, the NHLBI has information about the clinical trials they are currently working on. Again, you can also find information on clinical trials at children’s hospitals and universities.

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- Jaime Olsen, Mom to Tyler
Chicago, Illinois
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