HeartBytes is a national youth cardiac registry of seemingly healthy kids. It was developed and funded by Simon’s Fund to address the void of scientific cardiac data on children. HeartBytes is a digital platform to help streamline the heart screening process. It is also a public library for qualified researchers who want access to data (free of charge).
HeartBytes contains de-identified medical history, family history, vitals, electrocardiograms and echocardiograms for students between the ages of 12 – 19. It has been gathered through community-based youth heart screenings. Each participating screening organization subscribes to the same protocol. The registry has received IRB approval from Jefferson University Hospital.
You can view our Data Dictionary here.
Researchers from any institutions and with any opinion are invited to submit an online application. The request is vetted by an Independent Review Team comprised of distinguished academics and physicians from around the country.
If you are a HeartBytes user, you can download the Android app here.
HeartBytes was built with the help of some very talented and generous companies. Pulse InfoFrame built the registry and app where the data is collected and stored. INFINITT North America donated the cloud-based technology to store the electrocardiograms and echocardiograms. DataMed donated the ECG translation software. Amps LLC donated ECG conversion services.
Through generous donations from The Victor Thay Family and Fred and Diane Smith, funds are available to subsidize the licensing fees for screening organizations interested in using the technology.