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.

Sudden Cardiac Arrest: Definition, Causes, and Epidemiology

Sudden Cardiac Arrest (SCA) occurs when the heart suddenly stops pumping. It can happen to people with or without known heart disease and can lead to ...

Hypertrophic Cardiomyopathy

Hypertrophic cardiomyopathy (HCM) is a disease that affects the heart muscle. HCM is a genetic condition that runs in families, meaning it can be pass...

CPR Basics

CPR is an emergency procedure used when a person's heart suddenly stops beating and they stop breathing, a condition known as cardiac arrest.

What You’ll Find Here

Bringing together the tools, guides and educational materials that help families, schools and communities protect young hearts. Here, you’ll find clear information about sudden cardiac arrest, steps to create heart‑safe environments and practical support for prevention and preparedness. It’s a central place to learn, take action and join Simon’s Heart in safeguarding every child’s future.

Published Manuscripts

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

(Sports Health, 2023)

Parameters of cardiac symptoms in young athletes using the HeartBytes database

(Phys Sportsmed, 2021)

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

Resources

AED in Schools
State Tracker: National Association of State Legislatures
Research: Few States Require AEDs in SchoolsAEDs 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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Simon's Fund (dba Simon's Heart) is a 501(c)(3) nonprofit organization. Contributions are tax-deductible to the extent permitted by law.
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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."