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<article  class="node node--type-extramural-science-instance node--view-mode-full"
        data-title="Pediatric Heart Network (PHN)"
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                        <h1>
                            
<span>Pediatric Heart Network (PHN)</span>

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            <div class="field field--name-field-display-title field--type-string field--label-hidden field__item">Project began</div>
      
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            <div class="field field--name-field-text-information field--type-string field--label-hidden field__item">2001</div>
      
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            <div class="field field--name-field-url field--type-link field--label-hidden field__item"><a href="mailto:pembertonv@nhlbi.nih.gov" rel="noreferrer">Vicki Pemberton</a></div>
      
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            <div class="field field--name-field-url field--type-link field--label-hidden field__item"><a href="https://www.pediatricheartnetwork.org" rel="noreferrer">www.pediatricheartnetwork.org</a></div>
      
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                            On this page
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                        <ul>
                                                            <li>At a Glance</li>
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                                                                                                                                                Contribution to Science
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                                                                                                                                                How It Works
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                                                                                        <li>Feature</li>
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            <div class="field field--name-field-goal-title field--type-string field--label-hidden field__item">What is the goal of the PHN?</div>
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            <div class="field field--name-field-goal-description field--type-text-long field--label-hidden field__item"><p>Through the Pediatric Heart Network (PHN), the NHLBI funds research across a group of hospitals in the United States, Canada, and other <a href="https://www.pediatricheartnetwork.org/faq-our-studies/" rel="noreferrer"><span>countries</span></a><span> to accelerate the discovery of new treatments for congenital and pediatric-acquired heart disease. The PHN is the clinical cornerstone of the larger </span><a href="https://benchtobassinet.com/" rel="noreferrer"><span>Bench to Bassinet program</span></a><span>, a major effort the NHLBI launched to learn more about how the heart develops and why children are born with heart problems.</span></p><p>The goal of the PHN is to improve outcomes and quality of life for individuals with congenital and pediatric-acquired heart disease. Congenital heart defects occur in approximately 40,000 individuals in the United States each year and are a major cause of infant death.</p></div>
      
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                                        <div class="storycallouttitle" id="ataglance"><h2 class="at-a-glance-header">AT A GLANCE</h2></div>
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          <li><div class="field__item calloutdata font-size-xl">The PHN is part of the larger Bench to Bassinet program, which seeks to improve outcomes for individuals with pediatric-acquired and congenital heart disease.</div></li>
          <li><div class="field__item calloutdata font-size-xl">The network consists of several main clinical centers and dozens of additional research centers.</div></li>
          <li><div class="field__item calloutdata font-size-xl">The PHN has conducted 23 clinical studies and enrolled more than 10,000 participants.</div></li>
          <li><div class="field__item calloutdata font-size-xl">As survival rates of children with congenital heart defects improve, the PHN has expanded its current research to include adults with congenital heart disease.</div></li>
          <li><div class="field__item calloutdata font-size-xl">The first nurse-led clinical trial is testing whether a program of passive range of motion in newborns with congenital heart disease, will improve growth.</div></li>
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              <div class="field__item">        <h2 id="contribution-to-science">
            <div class="field field--name-field-standard-title field--type-string field--label-hidden field__item">How does the PHN contribute to scientific discoveries or improved clinical care?</div>
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            <div class="field field--name-field-description field--type-text-long field--label-hidden field__item"><p>The PHN has helped create better outcomes for children with heart diseases for more than a decade, by addressing particular research challenges. For example, many hospitals and individual doctors do not see enough children with any one type of heart disease to be able to conduct certain studies that would produce meaningful results. In addition, parents have been unable to enroll their children in studies that are available because they are not aware of them, do not live near a research center, or may not feel at ease about what happens during a study. The PHN was established to address these challenges by encouraging collaboration among multiple research teams that specialize in the care of patients with heart disease and patient advocacy groups.</p><p>The PHN’s longstanding collaborations positioned it well for pediatric SARS-CoV-2 research early in the COVID-19 pandemic. Leveraging its existing network of sites, PHN launched a study of children and adolescents with multi-system inflammatory syndrome (MIS-C), called <a href="https://covidmusicstudy.com/" rel="noreferrer"><span>MUSIC</span></a><span>. The MUSIC study is part of a trans-NIH program, </span><a href="https://caring4kidswithcovid.nih.gov/" rel="noreferrer"><span>CARING for Children with COVID</span></a><span>.</span></p></div>
      
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		Pediatric Heart Network (PHN)
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            <div class="field field--name-field-accordion-body field--type-text-long field--label-hidden field__item"><p>Major achievements and scientific findings from the PHN include:</p><ul><li>Teenagers born with a single working ventricle of the heart—a rare defect that cannot be completely corrected—showed a significant improvement in their ability to sustain moderate exercise after treatment with udenafil, a drug that helps improve blood flow</li><li>In the Single Ventricle Reconstruction (SVR) Trial, the largest clinical trial to compare surgical treatments for congenital heart disease, researchers found that infants born with a severely underdeveloped heart who undergo a newer surgical procedure were more likely to survive their first year and not require a heart transplant than those who had a more traditional surgical procedure. But when children were evaluated after 12 months of age, no differences were found in transplant-free survival. This group of children is continuing to be studied a decade later to help researchers understand the long-term effects of the different surgical procedures.</li><li>The PHN Nursing Research Program was developed to support studies led by nurse investigators. PHN nurse investigators ask questions that may not be the primary focus of their physician investigator colleagues, such as those related to quality of life, emotional adaptation of families, or feeding and growing difficulties in children with severe forms of congenital heart disease.</li></ul><p>The NHLBI also helped support the development of the <a href="https://www.nhlbi.nih.gov/studies/children-and-clinical-studies" rel="noreferrer">Children and Clinical Studies website</a>. Children have often had to accept medicines and treatments based on what is known to work in adults. To improve clinical care of children, more studies are needed focusing on children's health, with the goal to develop treatments, drugs, and devices specific to children. This website answers questions and features parents, researchers, and children themselves sharing their thoughts and experiences about clinical research.</p><p>As a whole, the PHN provides researchers with a powerful platform for advancing the health of individuals affected by congenital or pediatric-acquired heart disease. Perhaps most importantly, it has brought together a group of people for sustained collaboration over a significant period of time. The PHN has become such an established enterprise that every year U.S. News and World Report uses participation in the PHN as one of the criteria when judging hospitals in its annual issue on the Best Children’s Hospitals.</p><p>Investigators are encouraged to use the PHN’s available <a href="https://www.pediatricheartnetwork.org/login/" rel="noreferrer">data sets and resources</a> in their research. The PHN is also focused on training the next generation of researchers and establishing productive collaborations with foundations and patient advocacy groups.</p></div>
      
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            <div class="field field--name-field-description field--type-text-long field--label-hidden field__item"><p>The PHN is a cooperative effort between <a href="https://www.pediatricheartnetwork.org/study-map/" rel="noreferrer">participating medical centers</a>, a data coordinating center, and the NHLBI. The PHN proposes important research ideas, develops protocols, performs research, monitors patient safety and data, and disseminates the research findings. When studies need more patients than the main centers have, other skilled centers may be trained to conduct one or more of those studies. This helps families across the country have access to a center closer to them.</p><p>The studies are conducted with research teams that specialize in the care of patients with heart disease. All of the centers carefully follow a study protocol and treat patients in similar ways so that the study results are accurate. Patient safety is a high priority when a study is being planned and conducted. PHN nurses and doctors have had special training in doing research in ways that help protect patients in a study. They also have had training in how to conduct the specific PHN studies and are experienced with caring for families and their sick children.</p></div>
      
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                                        <h2><div class="blackstandardsubhead font-size-l" id="feature">FEATURE</div></h2>
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<img loading="lazy" src="/modules/custom/nhlbi_blazy/images/clear.png" width="675" height="380" alt="Gail Pearson, M.D., Sc.D." data-src="/sites/default/files/2024-02/Pearson%20Head%20Shot%202014_Gail%20Pearson.jpg" class="b-lazy" />

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            <div class="field field--name-field-featured-title field--type-string field--label-hidden field__item">NHLBI Celebrates Women Scientists</div>
      
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            <div class="field field--name-field-featured-description field--type-text-long field--label-hidden field__item"><p><span>As a pediatric cardiologist, Gail Pearson, M.D., Sc.D., faces heart disease where most people least expect to find it—in the very young and most vulnerable. As associate director of the Division of Cardiovascular Sciences at the National Heart, Lung, and Blood Institute (NHLBI) and director of the </span><a href="https://www.nhlbi.nih.gov/about/divisions/division-cardiovascular-sciences/adult-and-pediatric-cardiac-research-program" rel="noreferrer"><span>Adult and Pediatric Cardiac Research Program</span></a><span>, Pearson is able to understand, and affect, the complex world of heart disease from several perspectives.</span></p></div>
      
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            <div tabindex="0" class="field field--name-field-featured-link field--type-link field--label-hidden field__item"><a href="https://www.nhlbi.nih.gov/nhlbi-celebrates-women-scientists/gail-pearson-md-scd" rel="noreferrer">Read the Feature</a></div>
      

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                                    <h2>Related Scientific Focus Areas</h2>
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