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SCICD Pulse
News from the Stanford Center for Inherited Cardiovascular Disease
We are excited to introduce our first patient newsletter. Each issue will include updates from our Center, stories from our patients, research opportunities, local and national events, patient resources, and a whole lot more. We hope this will be an informative and engaging resource for you and look forward to being better connected to you through out the year. Let us know what you'd like to see in these pages so we can tailor the newsletter to you. Wishing you and your family a Happy New Year!

Warmest Regards, 

The SCICD Team 
About Us
Meet the Stanford Center for Inherited Cardiovascular Disease team!
We are a multidisciplinary team of doctors, nurses, nurse practitioners, genetic counselors, patient care coordinators, and researchers. Our team is passionate about providing exceptional patient care, education, and support to patients and their family members who have or are at risk for having an inherited heart condition.

We work with adults and children, and specializes in many inherited heart conditions such as:

- Inherited Cardiomyopathy
- Inherited Arrhythmia
- Inherited Cholesterol Conditions
- Marfan Syndrome and Related Aortic Disorders
- Familial Congenital Heart Disease 

In following newsletters we will highlight the different multidisciplinary groups within our team.
SCICD: In the News
Stanford scientists and their collaborators have devised an algorithm to predict the risk of a disease that, untreated, can lead to heart attack or stroke. 
Read More
Apple heart study demonstrates ability of wearable technology to detect atrial fibrillation. Recent findings from this virtual study that enrolled more than 400,000 participants.
Read More

A Stanford-led research team has mapped out a network of gene activity before and after heart failure to better understand how heart health declines.
Read More
Stanford faculty including Drs. Euan Ashley and James Priest are helping to lead collaborative research teams funded by the Chan Zuckerberg Biohub.
Read More
All over the country, specialized teams of doctors including Drs. Euan Ashley and Matthew Wheeler are giving hope to families who are desperately searching for a diagnosis.
Read More
Is genetic testing right for you? Learn more about what to consider when deciding if genetic testing is appropriate for you and your family, what types of genetic tests are available, and what testing may detect. 
Read More
Stories from Our Patients
When Heart Disease Is Inherited, Stanford Treats The Whole Family
The Daniel children share more than just a familial bond and childhood memories. They share a genetic mutation that puts them at risk of developing a life-threatening heart condition.
Read their story
Event Highlights
Each year our team hosts the Stanford Medicine MyHeart Counts 5K, 10K, & Kids Run - our walk/run celebrating life, heart health, and wellness!
Proceeds from the Stanford Medicine MyHeart Counts 5K & 10K Walk/Run support patient care, heart research, and education programs provided by our team.

Our next run will be held in Fall 2020. We'll be sure to keep you updated with dates and registration details as it gets closer!
 
You can learn more about the race here
CV Spotlight
This newsletter we are highlighting the following inherited heart condition: 
Familial Hypercholesterolemia (FH)
Learn more about FH here
Research
In each newsletter we’ll update you on the cutting-edge research we are working on.

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.
Interested in Joining a Research Study?
We are currently enrolling patients in clinical trials for the following:
- Dilated cardiomyopathy
- LMNA-related dilated cardiomyopathy

To learn more about these studies and whether you or a family member may qualify, click here.
Research studies recently published by members of our team:
Direct-to-consumer raw genetic data and third-party interpretation services: more burden than bargain?
A study led by Genetic Counselors Tia Moscarello and Chloe Reuter.
Effect of Genetic Diagnosis on Patients with Previously Undiagnosed Disease. 
A study led by Dr. Euan Ashley and Dr. Matthew Wheeler. 
Evolving Decisions: Perspectives of Active and Athletic Individuals with Inherited Heart Disease Who Exercise Against Recommendations.
A project led by Genetic Counselor Colleen Caleshu and Dr. Matthew Wheeler. Thanks to all our patients who took part in this study. 
Finding missed cases of familial hypercholesterolemia in health systems using machine learning.
A study led by Dr. Joshua Knowles with contributions from Genetic Counselors Mitchel Pariani, Hannah Ison, and Hannah Wand. 
Regional variation in RBM20 Causes a Highly Penetrant Arrhythmogenic Cardiomyopathy.
A study led by Dr. Victoria Parikh with contributions from Genetic Counselors Colleen Caleshu and Chloe Reuter.
Large-Scale Assessment of a Smartwatch to Identify Atrial Fibrillation.
A study led by Dr. Marco Perez.
Patient Resources
These organizations provide information, support and resources for individuals and families with inherited heart conditions.
Children's Cardiomyopathy Foundation
Pediatric
Cardiomyopathy
Hypertrophic
cardiomyopathy
Dilated
cardiomyopathy
Long qt, cpvt, brugada syndrome, sudden death, and other inherited arrythmias
Familial Hyper-cholesterolemia
Find a genetic counselor in your area. A resource for non-local family members
Please feel free to contact us with any additional resources that would be helpful to share with others!
Visit our Websites
Adult Center for Inherited Cardiovascular Disease
Recognized expertise in inherited cardiomyopathy, arrhythmia, aortic disorders, lipid conditions, and other genetic conditions. 
Read More
Pediatric Electrocardiography and Arrhythmia Program
Understanding your child’s irregular heartbeat, or arrhythmia, is our first step to developing a therapy or treatment to meet your child’s individual needs. 
Read More
Pediatric Advanced Cardiac Therapies Program
The PACT program provides comprehensive care for children and families affected with all types of cardiomyopathy as well as complex congenital heart disease.
Read More
We Want to Hear From You! 
If you would like to provide us with feedback on this newsletter please feel free to contact us at:
 
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Copyright © *|2019|* 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
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Stanford Center for Inherited Cardiovascular Disease · 300 Pasteur Dr · Stanford, CA 94305-2200 · USA