Why Research Never Reaches Families | Dr. Dawn Ilardi

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's an important step forward. But how do we make sure it actually reaches the families and patients it was written for?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%.We also get into my own experience — I had 11 cardiologists in my first 18 years because of insurance changes, and my family didn't even know CHD was a community until I was 20. My dad read every insurance document cover to cover and still didn't know what questions to ask. That's the gap Dawn is trying to close.She explains what she'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.Learn more about Dr. Ilardi's work:Parenting Kids with CHD: parentingchd.podia.comPediatric Neurodevelopmental Center: pedneurocenter.com/dawn-ilardi/Contacts: The One Percent Heart — onepercentheart.com • Instagram @theCHDpodcast • Email: [email protected] & 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.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