The National Heart, Lung, and Blood Institute (NHLBI) is strongly committed to supporting research aimed at preventing and treating heart, lung, and blood diseases and conditions and sleep disorders.
NHLBI-supported research has led to many advances in medical knowledge and care. For example, this research has uncovered some of the causes of heart diseases and conditions, as well as ways to prevent or treat them.
Many more questions remain about heart diseases and conditions, including congenital heart defects. The NHLBI continues to support research aimed at learning more about congenital heart defects. For example, the NHLBI currently sponsors two research groups that study congenital heart disease.
The Pediatric Heart Network conducts clinical research to improve outcomes and quality of life for children who have congenital heart disease and other pediatric heart diseases.
The Pediatric Cardiac Genomic Consortium (part of the NHLBI’s Bench to Bassinet Program) conducts clinical research to find the genetic causes of congenital heart disease. This group’s research also aims to pinpoint the genetic factors that affect clinical outcomes in people who have congenital heart disease.
Much of this research depends on the willingness of volunteers to take part in clinical trials. Clinical trials test new ways to prevent, diagnose, or treat various diseases and conditions.
For example, new treatments for a disease or condition (such as medicines, medical devices, surgeries, or procedures) are tested in volunteers who have the illness. Testing shows whether a treatment is safe and effective in humans before it is made available for widespread use.
By taking part in a clinical trial, you or your child can gain access to new treatments before they're widely available. You also will have the support of a team of health care providers, who will likely monitor your health closely.
Even if you don’t directly benefit from the results of a clinical trial, the information gathered can help others and add to scientific knowledge.
If you volunteer for a clinical trial, the research will be explained to you in detail. You’ll learn about treatments and tests you may receive, and the benefits and risks they may pose. You’ll also be given a chance to ask questions about the research. This process is called informed consent.
If you agree to take part in the trial, you’ll be asked to sign an informed consent form. This form is not a contract. You have the right to withdraw from a study at any time, for any reason. Also, you have the right to learn about new risks or findings that emerge during the trial.
Children (aged 18 and younger) get special protection as research subjects. Almost always, parents must give legal consent for their child to take part in a clinical trial.
When researchers think that a trial's potential risks are greater than minimal, both parents must give permission for their child to enroll. Also, children aged 7 and older often must agree (assent) to take part in clinical trials.
For more information about clinical trials related to congenital heart defects, talk with your doctor. You also can visit the following Web sites to learn more about clinical research and to search for clinical trials:
For more information about clinical trials for children, visit the NHLBI's Children and Clinical Studies Web page.
New pediatric imaging facility aims to improve treatment for congenital heart disease
Clinical trials are research studies that explore whether a medical strategy, treatment, or device is safe and effective for humans. To find clinical trials that are currently underway for Congenital Heart Defects, visit www.clinicaltrials.gov.
Visit Children and Clinical Studies to hear experts, parents, and children talk about their experiences with clinical research.
May 12, 2013
NIH Media Availability: Researchers take important step in unlocking what causes congenital heart disease
Findings from the first large-scale sequencing analysis of congenital heart disease bring us closer to understanding this most common type of birth defect.
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The NHLBI updates Health Topics articles on a biennial cycle based on a thorough review of research findings and new literature. The articles also are updated as needed if important new research is published. The date on each Health Topics article reflects when the content was originally posted or last revised.