Research Registry

The registry has received IRB approval from Jefferson University Hospital. Download the Data Dictionary to review our data subset. Digital ECG recordings are also available.

What Is it?

HeartBytes is a national youth cardiac registry of seemingly healthy kids. It was developed and funded by Simon’s Heart to fill the void of cardiac data on children. The data and images are crowdsourced by heart screening organizations and made available to qualified researchers (free of charge).

Published Research Projects

Published Manuscripts

Relationship between caffeine consumption and youth athletes’ comorbidities and baseline ECGs

(Sports Health, 2023)
Learn More

Parameters of cardiac symptoms in young athletes using the HeartBytes database

(Phys Sportsmed, 2021)
Learn More

Accepted Abstracts

2023

Swimming Exercise in Youth Athletes is Associated with Reduced Cardiovascular Risk Factors: An Analysis of the HeartBytes Dataset.
Published by: Farhan S, Dikdan S, Johnson D, Shipon D.
Accepted for poster presentation at AHA Scientific Sessions, Philadelphia, PA (November, 2023).
Relationship between Obesity and Youth Athletes’ Physical Activity and Exercise Related Symptoms.
Published by: Qiu G, Riley J, Dikdan S, Johnson D, Masood I, Hajduczok A, Shipon D.
Abstract accepted for poster presentation at AHA Scientific Sessions, Philadelphia, PA (November, 2023).
Frequency of Abnormal Cardiac Screens: Analysis of a National Cardiac Youth Registry.
Published by: Fox Ni, Fox No, Farrehi C, Dikdan S, Hajduczok A, Shipon D.
American Heart Association Scientific Sessions, Philadelphia, PA (November, 2023).
Mental health and the youth athlete: an analysis of the HeartBytes database.
Published by: Dikdan S, Sun M, Vyas A, Ruge M, Farber J, Johnson D, and Shipon D.
Poster presented at American College of Cardiology Conference, New Orleans, LA (March, 2023).

2022

Caffeine Consumption on Young Athlete’s Comorbidities, Exercise-Related Symptoms, and Baseline Electrocardiogram.
Published by: Farber J, Dikdan S, Ruge M, Johnson D, and Shipon D.
Poster presented at American Heart Association Scientific Sessions, Chicago, IL (November 2022).
Echocardiography in youth athlete screening: Simon’s Heart experience.
Published by: Johnson D, Doshi H, Dikdan S, Frankel E, Shipon D.
Poster presented at the American College of Cardiology Conference, Washington, DC. (2022, April).

2020

Endurance Sports Participation is Associated with Increased Syncope in Adolescents: An Analysis of the Heartbytes Screening Registry.
Published by: Wellings J, Nair A, Weiss M, Dikdan S, Johnson D, Langstaff R, Koilor C, Stanton M, Shipon D.
Poster presented virtually at the American College of Cardiology Conference, Philadelphia PA (2020, March).
Increased Physical Activity is Associated with Lower Prevalence of Cardiac Symptoms in Adolescents An Analysis of the Heartbytes Screening Registry.
Published by: Nair A, Weiss M, Dikdan S, Wellings J, Johnson D, Rao P, Langstaff R, Shipon D
American Heart Association Scientific Sessions 2020, Virtual (2020, March)

Independent Projects Funded by Simon's Heart

Simon’s Heart has funded independent research projects as well. Those publications can be found in the links below.

Resources

AED in Schools
State Tracker: National Association of State Legislatures
Research: Few States Require AEDs in Schools, AEDs in Schools Prove Effective

Anomalous Coronary Artery
Research: Congenital Anomoloies of the Coronary Arteries

Arrhythmyogenic Right Ventricular Dysplasia (ARVD)
Research: A Pediatric Case Report on Arrhythmogenic Right Ventricular Dysplasia

Brugada Syndrome
Research: Brugada Syndrome in Children

Cardiac Emergency Response Plan
Advocacy Group: Project ADAM

Commotio Cordis
Advocacy Group: Louis J. Acompora Foundation
Research: Commotio Cordis

CPR in Schools
Advocacy Group: American Heart Association
State Tracker: CPR in Schools Legislative Map

Hypertrophic Cardiomyopathy
Advocacy Group: Children’s Cardiomyopathy Foundation
Research: Hypertrophic Cardiomyopathy in Youth Athletes
About: Cardiomyopathy and Your Child

Left Ventricular Non-Compaction
Research: Mortality and Sudden Death in Pediatric Left Ventricular Noncompaction

Long QT Syndrome
Advocacy Group: SADS Foundation
About: What is Long QT Syndrome?

Marfan Syndrome
Advocacy Group: Marfan Foundation
Research: Health Supervision for Children with Marfan Syndrome

Myocarditis
Advocacy Group: Myocarditis Foundation 
Research: Diagnosis and Treatment of Viral Myocarditis

Sudden Cardiac Arrest
Advocacy Group: Parent Heart Watch 

Sudden Infant Death Syndrome
Advocacy Group: First Candle 
Research: Is There a Relation between Long QT and SIDS

Wolff Parkinson White Syndrome
Advocacy Group: SADS Foundation
Research: Wolff Parkinson White Syndrome

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Interested in gaining access to our data?
Submit a research request.
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HeartBytes is a national youth cardiac registry of seemingly healthy kids. It was developed and funded by Simon’s Heart to fill the void of cardiac data on children. The data and images are crowdsourced by heart screening organizations and made available to qualified researchers (free of charge).

The registry has received IRB approval from Jefferson University Hospital. Download the Data Dictionary to review our data subset. Digital ECG recordings are also available.

Here is a list of all published research projects to date:

The Importance of Family History in a Pre-Participation Screening Program
Prevalence of Hypertension among US High School Students
Left Ventricular Hypertrophy in a College Athlete: Physiological or Pathological?
Parameters Associated with Abnormal Cardiac Conditions in Adolescent Athletes
Trends in Athlete ECG Interpretation in a Large Youth Cardiovascular Screening Organization
Racial and Ethnic Trends in Athlete ECG Interpretation Utilizing International ECG Criteria
Prevalence and Significance of Isolated T-Wave Inversion in Young Athletes

Published manuscripts:

Parameters of cardiac symptoms in young athletes using the Heartbytes database: Jones JC, Sugimoto D, Kobelski GP, Rao P, Miller S, Koilor C, Corrado GD, Shipon DM. Parameters of cardiac symptoms in young athletes using the Heartbytes database. Phys Sportsmed. 2021 Feb;49(1):37-44. doi: 10.1080/00913847.2020.1755908. Epub 2020 Apr 26. PMID: 32281468.

Relationship Between Caffeine Consumption and Young Athletes’ Comorbidities, Exercise-Related Symptoms, and Baseline Electrocardiogram: Farber J, Dikdan S, Ruge M, Johnson D, Shipon D. Relationship Between Caffeine Consumption and Young Athletes’ Comorbidities, Exercise-Related Symptoms, and Baseline Electrocardiogram. Sports Health. 2023 Apr 21:19417381231168828. doi: 10.1177/19417381231168828. Epub ahead of print. PMID: 37085973.

Accepted Abstracts:

Farhan S, Dikdan S, Johnson D, Shipon D. Swimming Exercise in Youth Athletes is Associated with Reduced Cardiovascular Risk Factors: An Analysis of the HeartBytes Dataset. Accepted for poster presentation at AHA Scientific Sessions 2023, Philadelphia, PA.

Qiu G, Riley J, Dikdan S, Johnson D, Shipon D. Relationship between Obesity and Youth Athletes’ Physical Activity and Exercise Related Symptoms. Abstract accepted for poster presentation at AHA Scientific Sessions November 2023, Philadelphia, PA.

Fox Ni, Fox No, Farrehi C, Dikdan S, Hajduczok A, Johnson D, Shipon D. (2023, November) Frequency of Abnormal Cardiac Screens: Analysis of a National Cardiac Youth Registry. American Heart Association Scientific Sessions 2023, Philadelphia PA.

Dikdan S, Sun M, Vyas A, Ruge M, Farber J, Johnson D, and Shipon D. (2023, March). Mental health and the youth athlete: an analysis of the HeartBytes database. Poster presented at American College of Cardiology Conference, New Orleans, LA.

Farber J, Dikdan S, Ruge M, Johnson D, and Shipon D. (November 2022). Caffeine Consumption on Young Athlete’s Comorbidities, Exercise-Related Symptoms, and Baseline Electrocardiogram. Poster presented at American Heart Association Scientific Sessions, Chicago, IL.

Johnson D, Doshi H, Dikdan S, Frankel E, Shipon D. (2022, April). Echocardiography in youth athlete screening: Simon’s Heart experience. Poster presented at the American College of Cardiology Conference, Washington, DC.

Wellings J, Nair A, Weiss M, Dikdan S, Johnson D, Langstaff R, Koilor C, Miller S, Shipon DM. (2020, March). Endurance Sports Participation is Associated with Increased Syncope in Adolescents: An Analysis of the Heartbytes Screening Registry. Poster presented virtually at the American College of Cardiology Conference, Philadelphia PA.

Nair A, Weiss M, Dikdan S, Wellings J, Johnson D, Rao P, Langstaff R, Shipon, DM. (2020, March) Increased Physical Activity is Associated with Lower Prevalence of Cardiac Symptoms in Adolescents An Analysis of the Heartbytes Screening Registry. American Heart Association Scientific Sessions 2020, Virtual.

If you are interested in gaining access to our data, please submit a research request.

Are you a screening group? Download the Android app.

HeartBytes was a collaborative effort. Pulse InfoFrame is the architect. INFINITT North America stores the images on its cloud-based platform. DataMed donated the ECG translation software. Amps LLC donated ECG conversion services.

The Victor Thay Family and Fred and Diane Smith generously donated funding to underwrite the licensing fees for screening organizations.

Simon’s Heart has funded independent research projects as well. Those publications can be found in the links below.

Usefulness of Combined History, Physical Examination, Electrocardiogram, and Limited Echocardiogram in Screening Adolescent Athletes for Risk of Sudden Cardiac Death

Electrocardiographic Screening in National Collegiate Athletic Association Athletes

Protecting Hearts. Saving Lives.

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Protecting Hearts. Saving Lives.

Powered by Hopeworks Technology Solutions

Jake Berman

“I attended a heart screening at Colonial Middle School when I was ten. I was in the marching band and liked to hike and rock climb. I was diagnosed with Wolff Parkinson White Syndrome. After my procedure, I kept doing the same things.”

Whitney Jones

Whitney’s commitment to heart health advocacy began at 10 years old when she and her mother, Rayna, were diagnosed with Long QT Syndrome during a Simon’s Heart screening at Downingtown West High School. Despite the diagnosis, Whitney pursued her passion for cheerleading and continued to thrive in the sport through her college years at St. Joseph’s University. After graduating, Whitney joined Stryker Instruments as the Senior Specialist for Off-Site Meeting and Events, where she skillfully orchestrates events that promote health and medical innovation. Further extending her impact, Whitney is an active member of the Simon’s Heart Young Professionals Committee, while her mother Rayna contributes her expertise on the Board of Directors.

Katie Asper

“I attended a heart screening at Upper Dublin High School when I was ten. I played soccer. I was diagnosed with Wolff Parkinson White Syndrome and had an ablation to fix the problem. I attend Temple University.”

Matthew Green

“I attended a heart screening in Mason, Ohio, when I was ten. I participated in baseball, basketball, and diving. I was diagnosed with an atrial septal defect. I had surgery to repair the hole and started wearing a protective shirt during activity. I am graduating from Miami University.”

Valerie Krawitz

“I attended a heart screening at Colonial Middle School when I was ten. I played baseball, soccer, and track. I was diagnosed with Long QT Syndrome and an atrial septal defect. I had heart surgery to repair the hole and I take medicine for the Long QT. I can’t play competitive sports like I once did, but found other activities. Next year, I’m attending Penn State University.”

Drew Harrington

“I attended a heart screening at Radnor High School when I was ten. I played lacrosse, tennis, and basketball. I was diagnosed with Wolff Parkinson White Syndrome. I used to feel my heart beat really fast, but just assumed it was fine. Coincidentally, on Simon’s 7th birthday, I had a procedure called an ablation. Today, my heart is fine and I attend the University of Richmond.”

Alaysia Keeley

“I attended a heart screening at Norristown High School when I was ten. I played softball and enjoyed going to the mall with my friends. I was diagnosed with Long QT Syndrome. I had to stop playing sports and drinking soda. Now, I take medication and live a normal life.”

Kyle McCabe

“I attended a heart screening at Norristown High School when I was ten. I played baseball, basketball, and football. I was diagnosed with Long QT Syndrome. I stopped playing sports to protect my heart, but I still manage to have fun.”

Melissa Fair

“I attended a heart screening at Colonial Middle School when I was ten. I loved dancing and hanging out with my friends. I was diagnosed with Partial Anomolous Pulmonary Venous Return and Atrial Septal Defect. The doctor told me that my life would have been cut short if I hadn’t found out. I’m graduating from Penn State University this year.”

Zach Steffens

“I attended a heart screening at Stillman Elementary School in Tenafly, N.J., when I was fourteen years old. I love running, Tae Kwon Do, and Armenian cultural dancing. I was diagnosed with a rare congenital defect called ALCAPA (Anomalous Left Coronary Artery from the Pulmonary Artery). I had open-heart surgery and recovered well. One month later, I suffered a cardiac arrest and an automated external defibrillator (AED) saved my life. I now have an implantable cardioverter defibrillator (ICD) and am healthier than ever. I will be attending The College of New Jersey and majoring in biomedical engineering.”

Annie FitzPatrick

“I went into sudden cardiac arrest at a local convenience store when I was 19 years old. My heart stopped and the only reason I am alive today is because an AED was readily available. I was diagnosed with Long QT Syndrome shortly after and was introduced to Darren and Phyllis with Simon’s Heart. I have been an active volunteer ever since. I went on to graduate Cum Laude from Drexel University with a double major in Business Analytics and Marketing and now work at a leading chemical company.”

Maeve Quinn

"I had a sudden cardiac arrest during softball tryouts at my high school. I was 15 years old. Thanks to the quick thinking of my coach and athletic trainer, they started doing CPR and using an AED immediately. This helped save my life. I had an implantable defibrillator surgically placed in case this happens again. I volunteer to educate people on the importance of screenings, learning CPR and the use of AEDs. Anyone can save a life like mine! I am planning on going to college for nursing."