Blog

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

    This month we are doing a throwback to the posts regarding research. Today, CCHD 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. This article was originally posted in 2016.  Have you ever noticed flyers…

  2. 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 CCHD joined with 142 other advocacy…

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

    Conquering CHD 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. Congenital heart disease…

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

    Conquering CHD 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

  5. Congenital Heart Futures Reauthorization Act (S.2248/H.R.3952)

    Congenital Heart Disease Legislation In November, 2015, the Congenital Heart Futures Act Reauthorization Bill was introduced in the Senate (S.2248) and House (H.R.3952) by legislative champions: Senator Dick Durbin (D-IL) Senator Bob Casey (D-PA) Representative Gus Bilirakis (R-FL) Representative Adam Schiff (D-CA)     Current Cosponsors (Updated 3/8/16) Senate Cosponsors Sessions, Jefferson “Jeff” [R-AL] – (joined Nov 16, 2015) Bennet,…

  6. CDC Awards Next Round of CHD Surveillance Grants

    At the Conquering CHD, advocating for increased funding for data collection and public health research has always been a top priority.  Each year, our advocates call on Congress to give money to the CDC as part of the Congenital Heart Futures Act.  Shortly after this new law passed in 2010, the CDC awarded 3 four-year grants to work…

  7. Research Matters: Risk and Prevalence of Developmental Delay in Young Children with Congenital Heart Disease

    Conquering CHD is thrilled to bring you a new series titled Research Matters. In their commitment to make research meaningful and accessible to patients and families, members of our Medical Advisory Board have created summaries of important research and describe what it means for you. Risk and Prevalence of Developmental Delay in Young Children with Congenital Heart Disease By…

  8. Breaking News: NIH multi-centered research renewed!

    Conquering CHD is thrilled to learn that the NHLBI has approved a renewal of the Pediatric Heart Network for another grant cycle.  It has been approved for a 7-year grant period, with a total budget of approximately $52M.  This research network supports the necessary infrastructure for multi-centered research collaboration. We look forward to sharing more…

  9. Pulse-ox Screening: New Key findings

    Conquering CHD supports early detection of critical congenital heart disease, including CCHD screening through the use of pulse-oximetry. The journal Pediatrics has published a new study estimating the number of infants with critical congenital heart defects (critical CHDs) potentially detected or missed through universal screening for critical CHDs using pulse oximetry. CDC researchers estimated that…

  10. Participants Needed: Preparing for your doctor’s appointment

    Conquering CHD is collaborating with an IT developer working on patient empowerment through different internet applications. We are currently seeking 10 parents interested in helping us try something new to help parents and caregivers prepare for upcoming pediatrician or cardiology visits. Interested people must: Have at least minimal comfort level with social networking, i.e. Facebook. Have…