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  1. The Promise of Research for CHD, and Our Responsibility to Advocate

    Advancement in standards of care and best practices can only happen with research.  This week, Margaret King discusses the implications increased CHD research has on not only the community but society as a whole, as well as how important it is for each one of us to contact our representatives to increase research funding.   …

  2. Research Blog Series Recap

    For the month of October, PCHA recognized the importance of Research. All different kinds of research are vital to finding a treatment and an eventual cure for CHD and we thank all the clinicians, scientists, and patient volunteers for their important contributions to CHD research. The fight to conquer CHD is strengthened by the involvement of…

  3. Research Matters: Why Should My Child Participate in Clinical Research?

    As we continue with our theme of research for the month of October, PCHA welcomes back NIH medical officer and pediatric cardiologist Dr. Kristin Burns. Dr. Burns answers some frequently asked questions about clinical research and provides information about ongoing clinical research studies.     Have you ever noticed flyers posted in the waiting room…

  4. Research Matters: Genetic Link Between CHD and Neurodevelopmental Disorders

    As we continue with our focus on genetics and genomics research, PCHA welcomes NIH medical officer Dr. Jonathan Kaltman. Dr. Kaltman provides an overview of a recent study that uses genomic data to establish a genetic link between congenital heart disease (CHD) and neurodevelopmental disorders. This study provides an important example of how genetics and…

  5. Research Matters: Genetics and Genomics Research – Why It Matters

    This week, PCHA focuses on genetics and genomics research and discusses why these studies are important for understanding the underlying genetic causes of CHD. At some point during a hospital visit, you may have been asked to enroll your child in a genetic study. To help parents and caregivers make a more informed decision about…

  6. Research Matters: Psychosocial Functioning of Adolescents with D-Transposition of the Great Arteries

    Continuing our theme of Research, PCHA welcomes back pediatric psychologist Dr. Erica Sood. Dr. Sood provides an overview of research studies that highlight the importance of monitoring children and adolescents with CHD for psychosocial issues and that further reveal how parent/caregiver stress can affect the emotional and behavioral functioning of a child with CHD.  …

  7. Research Matters: The Importance of CHD Surveillance

    For the month of October, PCHA will be focusing on the theme of Research. In the first post of our series, Dr. Matt Oster provides an overview of a recent study that estimates the prevalence of CHD across all age groups in the United States and highlights the importance of surveillance in improving outcomes for…

  8. Update: Save vital CHD research funding!

    Advocacy Works: Senator Durbin’s Amendment to support research not red tape passed yesterday afternoon with a bi-partisan win of 66-32. A huge thank you to all of you who have called, tweeted and shared your stories.  National advocacy efforts were mentioned multiple times during the debates, including a letter that PCHA joined with 142 other advocacy…

  9. Calling on Congress to Support Research, Not Red Tape

    The Pediatric Congenital Heart Association is urging Senators to support Illinois Senator Durbin’s Amendment #4369 to S. 2943, the fiscal year 2017 National Defense Authorization Act.  By eliminating Sections 756 and 898 of the legislation, this amendment will ensure that the critical, cutting-edge congenital heart disease research happening at the Department of Defense (DoD) can continue….

  10. Research Matters: An Innovative Treatment for Plastic Bronchitis – What it Means

    The Pediatric Congenital Heart Association is thrilled to bring our latest in the series titled Research Matters. In our commitment to make research meaningful and accessible to patients and families, volunteers along with members of our Medical Advisory Board have created summaries of important research and describe what it means for you.

    Plastic bronchitis (PB) is a rare but life-threatening complication that can arise following the Fontan procedure. PB patients develop large