Why Research Never Reaches Families | Dr. Dawn Ilardi

<p>Ten experts from eight institutions spent over a year building a consensus statement on adult congenital heart disease. It was published in the Journal of the American Heart Association — free, open access. It&#39;s an important step forward. But how do we make sure it actually reaches the families and patients it was written for?</p><p><br></p><p>In Part 2 with Dr. Dawn Ilardi, we talk about what happens after research gets published. Dawn walks through the real barriers — dense jargon, paywalls, researchers doing science as a side project on top of full clinical caseloads — and a stat that changed everything for her: only 29% of high-risk kids return for the developmental follow-up they need. At her own institution, it was 10%.</p><p><br></p><p>We also get into my own experience — I had 11 cardiologists in my first 18 years because of insurance changes, and my family didn&#39;t even know CHD was a community until I was 20. My dad read every insurance document cover to cover and still didn&#39;t know what questions to ask. That&#39;s the gap Dawn is trying to close.</p><p><br></p><p>She explains what she&#39;s building with Parenting Kids with CHD — an online resource that arms parents with language, patterns, and practical guidance so they can advocate for their children in schools, in clinics, and at home.</p><p><br></p><p>Learn more about Dr. Ilardi&#39;s work:</p><p>Parenting Kids with CHD: parentingchd.podia.com</p><p>Pediatric Neurodevelopmental Center: pedneurocenter.com/dawn-ilardi/</p><p><br></p><p>Contacts: The One Percent Heart — onepercentheart.com • Instagram @theCHDpodcast • Email: support@onepercentheart.com</p><p><br></p><p>Disclaimer &amp; Trigger Warning: Nothing in this episode constitutes medical advice. These are personal experiences, opinions, and stories. This podcast contains honest discussions of medical trauma. Listener discretion is advised.</p><p><br></p><p>Keywords: congenital heart defect, CHD research, JAHA consensus statement, science communication, neurodevelopmental follow-up, patient advocacy, Parenting Kids with CHD, adult congenital heart disease, CHD awareness, CNOC</p>