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STANFORD CENTER FOR INHERITED CARDIOVASCULAR DISEASE
SCICD Pulse
News from the Stanford Center for Inherited Cardiovascular Disease 
Welcome to our Fall Newsletter!
 
We hope, despite these troubling times, that this letter finds you well. After a difficult year, we now find ourselves in the unusual situation of feeling positive about having effective COVID treatments and even vaccines while at the same time worrying about rising case counts across the country. This worry is accentuated by winter and the upcoming Holiday season. We know you have questions and we are here to help! One of the most important reasons for putting the newsletter together was to connect with each one of you outside of clinic. We hope that our news sections and our all-new video interviews help answer the questions you have. We also aim to keep you informed about major advancements in the diagnosis and treatment of inherited cardiovascular disease, especially those coming from our team here at Stanford. From time to time, we also hope to introduce you to vital members of the team that you might not have had the chance to meet in person. As always please feel free to forward this message to anyone you feel might enjoy it. Here’s to a safe holiday season in 2020 and a considerably less distanced 2021.
 
Warmest Regards,

The SCICD Team 

COVID-19:
Where Are We Now?
Join Dr. Ashley, Hannah Ison, and Nancy Robles as they discuss topics such as:
  • What we've learned about COVID-19
  • The latest on vaccines
  • How to stay safe during this holiday season 

Upcoming Event 
Affairs of the Heart: Living with Inherited Cardiomyopathy

The Stanford Center for Inherited Cardiovascular Disease and SHaRe Registry are hosting a VIRTUAL patient education conference for inherited cardiomyopathy on Tuesday evening, January 26th and we need your input! 

 
This event will offer the opportunity to:
  • Learn about cutting edge therapies and technologies
  • Gain insight into our current understanding of COVID-19 and the heart
  • Participate in an interactive Q&A with your medical team
To help us best meet your needs, please click below and let us know which topics you’re most interested in learning about!
Registration will open in December - Details will be sent at that time

Event Highlights: 
MyHeart Counts Virtual 5K & 10K
The Stanford Medicine MyHeart Counts 5K & 10K is our annual walk/run celebrating life, heart health, and wellness. 

Proceeds from this event support patient care, heart research, and education programs provided by our team including:
  • Education and screening programs for heart disease
  • Providing heart disease tests for those in need
  • Advancing cutting-edge research to prevent or cure heart diseases that still take too many, too early
Watch the recording of the live stream event! Be inspired by personal stories shared by our patient champions Lilian Lam and Elise Munsey.
To learn more about how to make a donation, please contact familyheart@stanford.edu

In the News
Op-Ed: Could COVID-19 Set Off a Wave of Heart Disease? By: Euan Ashley, MD, PhD
"The pace of scientific advance has been dizzying — more than 50,000 papers have been written this year on COVID, which is more than five times the number that have ever been written on mononucleosis."
Read More Here
Dr. Marco Perez receives the Clinical Research Achievement Award for the following study: “Large-Scale Assessment of a Smartwatch to Identify Atrial Fibrillation,” published in The New England Journal of Medicine
Read More here
Watch more here
Whether or not you’ve ever had genetic testing, you probably know someone that has. Featuring Cardiovascular Genetic Counselor Tia Moscarello: "Inaccurate direct-to-consumer raw genetic data can harm patients, new research suggests."
Read More Here
From the New York Times: How does antibody testing work?
"Stanford Health Care gave us exclusive access to show how coronavirus antibody testing works. So we followed two caregivers and their blood, through the testing process."
watch More Here

Join a Research Study
We conduct many different types of research aimed at helping families with inherited heart disease.

This includes clinical trials of new medications, studies trying to find the genetic causes of heart disease, research using new technologies like artificial intelligence and digital health monitors, and laboratory experiments to better understand how genetic heart diseases develop.
We are currently enrolling for the following  indications:

  • Heart Failure
  • Hypertrophic Cardiomyopathy (HCM)
  • LMNA-related cardiomyopathy
To learn more about these studies and whether you or a family member may qualify, click here.
A few of the research studies recently published by our team:
Broad Genetic Testing in a Clinical Setting Uncovers a High Prevalence of Titin Loss-of-Function Variants in Very Early Onset Atrial Fibrillation
A study led by Dr. Marco Perez and Dr. William Goodyer with contributions from Dr. Scott Ceresnak, Dr. Kara Motonaga, Dr. Anne Dubin, Dr. Euan Ashley & Genetic Counselors Kyla Dunn, Colleen Caleshu, Tia Moscarello, Julia Platt, and Chloe Reuter.
Combining Clinical and Polygenic Risk Improves Stroke Prediction Among Individuals with Atrial Fibrillation
A study lead by Dr. Jack O'Sullivan and Dr. Euan Ashley with contributions from Dr. Marco Perez, Dr. Shoa Clark, and Genetic Counselor Hannah Wand.
Pathological Overlap of Arrhythmogenic Right Ventricular Cardiomyopathy and Cardiac Sarcoidosis
A study led by Dr. Victoria Parikh with contributions from Dr. Euan Ashley, and Genetic Counselors Chloe Reuter and Colleen Caleshu.
Yield of Whole Exome Sequencing in Undiagnosed Patients Facing Insurance Coverage Barriers to Genetic Testing
By Genetic Counselors Chloe Reuter and Jennifer Kohler, and Dr. Matthew Wheeler.

Additional Research Opportunities
Join a global cardiovascular research study today. Help us learn how to combat heart disease and stroke—the world’s #1 killer.

Download the app today.  Let’s see how active you are and how healthy your heart is! You will learn about your risk for heart disease and stroke and what you can do to help keep your heart healthy.

Learn more about this study and how to enroll by clicking here

See Our Patients' Stories Come to Life in Dr. Ashley's New Book!
In The Genome Odyssey, Dr. Euan Ashley, Stanford professor of medicine and genetics, brings the breakthroughs of precision medicine to vivid life through the real diagnostic journeys of his patients and the tireless efforts of his fellow doctors and scientists as they hunt to prevent, predict, and beat disease.
 

Patient Resources
These organizations provide information, support and resources for families and individuals with inherited heart conditions.
Children's Cardiomyopathy Foundation
Pediatric
Cardiomyopathy
Hypertrophic
cardiomyopathy
Dilated
cardiomyopathy
LONG QT, CPVT, BRUGADA SYNDROME, SUDDEN DEATH, AND OTHER INHERITED ARRHYTHMIAS
Familial Hyper cholesterolemia (FH)
Lipoprotein A
STANFORD CENTER FOR INHERITED CARDIOVASCULAR DISEASE alt tag goes here
Stanford MEDICINE | Lucile Packard Children's Hospital
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Copyright © *|2020|* Stanford Center for Inherited Cardiovascular Disease, All rights reserved.
You are receiving this email as a patient of the Stanford Center for Inherited Cardiovascular Disease and/or as a past participant of a Stanford Health Care 5K/10K benefiting heart research and patient care at Stanford.
Our mailing address is:
Stanford Center for Inherited Cardiovascular Disease 300 Pasteur Dr, Stanford, CA 94305-2200

Our email address is: familyheart@stanford.edu
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Stanford Center for Inherited Cardiovascular Disease · 300 Pasteur Dr · Stanford, CA 94305-2200 · USA