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STANFORD CENTER FOR INHERITED CARDIOVASCULAR DISEASE
SCICD Pulse

News from the Stanford Center for Inherited Cardiovascular Disease
Welcome to Our Spring Newsletter
 
We hope you and your family are doing well during this time. Though this past year has been challenging, we are inspired by the resilience of our patients and community.

Hope is on the horizon as more individuals become eligible for the COVID-19 vaccine, and hospitalizations begin to decline. With this newsletter, we aim to keep you informed about the latest on COVID-19 vaccines and eligibility. We also aim to share information on major advancements in the diagnosis and treatment of inherited cardiovascular disease, and have included interviews from our team with more information on these topics. 

As always please feel free to forward this message to anyone you feel might enjoy it. 
 
Warmest Regards,

The SCICD Team 

Latest on COVID-19 Vaccine Distribution
Individuals currently eligible for the vaccine through Stanford as of March 15th, 2021:
  • Individuals ages 16-64 who are at the highest risk for morbidity and mortality from COVID-19 due to their health condition. The following heart conditions, per CDC and CA State guidelines, are included under this list (click here to see a complete list of all health conditions):
    • Heart failure
    • Coronary artery disease
    • Cardiomyopathies
    • Immunocompromised state from solid organ transplant
  • * Stanford patients will be asked to complete an attestation confirming that they have one of the health conditions listed by the CDC.
  • * Stanford does NOT require a letter from your physician. Patients may use their MyHealth record if outside vaccine sites require documentation.
  • * Due to the unpredictability of vaccine supply, appointment availability may vary. 
Other groups eligible for the vaccine:
  • Persons at risk of occupational exposure to COVID-19 through their work in any role in the following sectors will be eligible:
    • Education and childcare (including staff and any other workers involved in child and/or student care)
    • Emergency services
    • Agriculture and food
  • Health care workers
  • Individuals 65+ 
The CDC recently updated guidelines regarding gatherings, what's safe, and what precautions still need to be taken once you are fully vaccinated.

When is someone considered fully vaccinated?
  • Per CDC guidelines, people are considered fully vaccinated:
    • 2 weeks after their second dose in a 2-dose series, like the Pfizer or Moderna vaccines,  or
    • 2 weeks after a single-dose vaccine, like Johnson & Johnson’s Janssen vaccine
  • If it has been less than 2 weeks since your shot, or if you still need to get your second dose, you are NOT fully protected.

What activities are safe once fully vaccinated?
  • Can visit with other fully vaccinated people indoors without wearing masks or physical distancing
  • Can visit with unvaccinated people from a single household who are at low risk for severe COVID-19 disease indoors without wearing masks or physical distancing
  • Should refrain from quarantine and testing following a known exposure if asymptomatic

Is it safe to get the vaccine if you have a cardiac condition?


Additional Resources:

Hypertrophic Cardiomyopathy & Novel Therapies: Insights from our Team 


Join Dr. Wheeler, Dr. Parikh, and Dr. Kawana as they discuss the novel therapies being developed to treat hypertrophic cardiomyopathy. 

Event Highlights
Affairs of the Heart: Living with Inherited Cardiomyopathy

The Stanford Center for Inherited Cardiovascular Disease and SHaRe Registry hosted a VIRTUAL patient education conference for inherited cardiomyopathy. 

The conference covers the following topics:

  • COVID Pandemic and the Heart - Euan Ashley, MD, PhD
  • Cutting Edge Therapies and Interventions - Victoria Parikh, MD
  • Genetics and Your Heart - Julia Platt, MSc, LCGC
  • Patient Speaker Story - Bouba Diemé DCM/LVNC
Click Here to watch

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."

In the News
Stanford Uses Whole Genome Sequencing to Track Inherited Heart Disease
"Doctors at Stanford have just launched a system that will help them better treat patients with difficult inherited diseases. Not just by learning about their history, but by finding out what's in their genes."
Watch More Here| Read More Here
How Exactly Does a Heart Monitor Track Your Heart Health? Featuring Dr. Marco Perez. "Tracking your heart rate during workouts isn’t new, but heart rate tracking technology is rapidly advancing." 
Read More here
 
South Africa Variant Arrives in the Bay Area KQED- Featuring Dr. Ashley. "In this hour, we hear about the latest research on new variants and vaccine efficacy against them, and we get an update on coronavirus numbers as the region continues to see a slowing of cases and deaths."
Listen Here
A Teenager Doesn't Let a Serious Heart Condition Get too Serious. Featuring Dr. Scott Ceresnak. "Dr. Ceresnak ordered a workup, including exercise stress testing and echocardiography. Results showed that Aiden had diminished heart function and a different kind of arrhythmia than he’d had in the past."
Read 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:
A Person-Centered Approach to Cardiovascular Genetic Testing.
A review by lead genetic counselor, Julia Platt. 
Promise and Peril of Population Genomics for the Development of Genome-First Approaches in Mendelian Cardiovascular Disease
A review by Dr. Victoria Parikh.
The need for polygenic score reporting standards in evidence-based practice: lipid genetics use case
A review by Cardiovascular Genetic Counselor, Hannah Wand, Dr. Joshua Knowles, and Dr. Shoa Clarke.

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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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