Genetic Heart Rhythm Diseases: Resources

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Welcome to the Genetic Heart Rhythm Diseases page. The Mayo Clinic Windland Smith Rice Genetic Heart Rhythm Clinic, with the Windland Smith Rice Sudden Death Genomics Laboratory in Rochester, MN, is dedicated to diagnosing, treating, and researching all types of genetic heart rhythm diseases that can cause sudden death. Follow the Genetic Heart Rhythm Diseases page and stay up-to-date as we post stories, clinical trials, and useful information regarding your genetic heart rhythm condition.

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Our patient resources page is for patients and loved ones looking for more information related to genetic heart rhythm disorders. Helpful websites with more information on genetic heart rhythm disorders, information on safe medication use, as well as websites for patients to connect with each other, are listed below.

COVID-19

• Marked Up-Regulation of ACE2 in Hearts of Patients with Obstructive Hypertrophic Cardiomyopathy: Implications for SARS-CoV-2-Mediated COVID-19 - Scientific paper by Dr. J. Martijn Bos published online in Mayo Clinic Proceedings on April 27, 2020
• Antimalarials widely used against COVID-19 heighten risk of cardiac arrest. How can doctors minimize the danger? - Article published by Science magazine and the American Association for the Advancement of Science (AAAS) on April 21, 2020
• Pediheart Podcast #114: Navigating the QTc Prolonging Potential of Possible Therapies for COVID-19 - Pediheart: Pediatric Cardiology Today Podcast, hosted by Dr. Robert H. Pass and featuring Dr. Michael Ackerman
• Mayo Clinic cardiologist: 'Inexcusable' to ignore hydroxychloroquine side effects - Article published by NBC News on April 7, 2020
• COVID-19 Miniseries Episode 10: How to Mitigate Drug-Induced Sudden Cardiac Death from Hydroxychloroquine - Mayo Clinic Talks Podcast, hosted by Dr. Darryl Chutka and featuring Dr. Michael Ackerman on April 6, 2020
• This Mayo Clinic Radio program from April 4th, 2020, shares the latest information on the COVID-19 (coronavirus) pandemic and features Dr. Abinash Virk, a Mayo Clinic infectious diseases specialist, Caroline Poland, a licensed mental health counselor, Dr. Michael Ackerman, a Mayo Clinic genetic cardiologist and director of the Windland Smith Rice Sudden Death Genomics Laboratory, and Dr. Joseph Sirven, a Mayo Clinic neurologist.
• Trump-touted malaria drug front and center in coronavirus treatment fight - Article published by The Washington Times on April 1, 2020
• SARS-CoV-2, COVID-19, and inherited arrhythmia syndromes - Scientific paper by Dr. Arthur Wilde and Heart Rhythm Journal published online March 31, 2020
• Mayo warns drug touted by Trump as COVID-19 cure will "claim lives" - Article published by Post Bulletin on March 28, 2020
• Urgent Guidance for Navigating and Circumventing the QTc Prolonging and Torsadogenic Potential of Possible Pharmacotherapies for COVID-19 - Scientific article senior-authored by Dr. Michael J. Ackerman published online in Mayo Clinic Proceedings on March 25, 2020
• Guidance on patients at risk of drug-induced sudden cardiac death from off-label COVID-19 treatments - Article published by Mayo Clinic News Network on March 25, 2020

Disorder-Specific Information

• For up-to-date videos, check out and subscribe to Dr. Michael J Ackerman's YouTube Channel.
• Follow Dr. Ackerman (@MJAckermanMDPhD) and Mayo Clinic's Windland Smith Rice Genetic Heart Rhythm Clinic (@MayoClinicWSRGH) on Twitter.
• The Sudden Arrhythmia Death Syndromes (SADS) Foundation’s mission is to save lives and support the families and adults who are genetically predisposed to sudden death due to heart rhythm abnormalities like long QT syndrome (LQTS), catecholaminergic polymorphic ventricular tachycardia (CPVT) and Brugada syndrome (BrS).
• The Sudden Unexpected Death in Childhood (SUDC) Foundation is the only organization worldwide whose purpose is to promote awareness, advocate for research and support those affected by SUDC.
• The Hypertrophic Cardiomyopathy Association (HCMA) is the preeminent organization improving the lives of those with hypertrophic cardiomyopathy (HCM), preventing untimely deaths and advancing global understanding.
• GINAhelp.org is a great website to answer questions about how your genetic heart disorder may or may not affect health insurance and employment.

National Organizations

• The American Heart Association (AHA) has been fighting heart disease and stroke, striving to save and improve lives for nearly 100 years.
• The National Heart, Lung and Blood Institute (NHLBI), a division of the National Institute of Health (NIH), provides global leadership for research, training, and education program to promote the prevention and treatment of heart, lung and blood disorders.

Medication Information

• www.crediblemeds.org is a searchable resource on safe medication use for healthcare providers, research scientists, and the public. They maintain the QT Drug list that has a risk of QT prolongation and cardiac arrhythmias under a contract with the FDA’s Safe Use Initiative.
• www.brugadadrugs.org is used as an aid to physicians who treat patients with Brugada syndrome and as an aid to patients with Brugada syndrome and their families with the goal to provide free, worldwide accessible and up-to-date information on safe drug use in Brugada syndrome.

General Genetic and Rare Conditions Information

• Genetics Home Reference (GHR) is your guide to understanding genetic conditions. They provide consumer-friendly information about the effects of genetic variation on human health.
• The Genetic and Rare Diseases (GARD) Information Center provides the public with access to current, reliable and easy-to-understand information about rare or genetic diseases.
• National Organization for Rare Disorders (NORD) is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.

Connecting with Others

• Camp Odayin provides fun, safe and supportive camp experiences and community-building opportunities for young people with heart disease and their families.
• Camp del Corazon is a nonprofit organization that provides year-round experiential opportunities for children faced with the challenges of growing up and living with heart disease.
• Make-A-Wish is a nonprofit that serves a unique, and vital, role in helping strengthen and empower children battling critical illnesses by granting wishes that change the lives of the kids they serve.

Current Guidelines  and Scientific Statements

Guidelines and scientific statements are used by doctors to know the best way to diagnose, treat and prevent diseases and conditions. A rigorous and thorough process is used to develop these recommendations and they are based on the strongest available scientific evidence. Guidelines are available for a very diverse variety of diseases and conditions. For more information, visit this article written and published by the American Heart Association. Below are the most current guidelines related to GHDs used in the Genetic Heart Rhythm Clinic.

Guidelines:

• Syncope: American College of Cardiology (ACC)/American Heart Association (AHA)/Heart Rhythm Society (HRS) Guideline for the Evaluation and Management of Patients With Syncope (2017)
• *Ventricular arrhythmias and the prevention of sudden cardiac death: American Heart Association (AHA)/American College of Cardiology (ACC)/Heart Rhythm Society (HRS) Guideline for Management of Patients with Ventricular Arrhythmias and the Prevention of Sudden Cardiac Death (2017)
• Assessment of cardiovascular risk: American College of Cardiology (ACC)/American Heart Association (AHA) Guideline on the Assessment of Cardiovascular Risk (2013)
• Device-based therapies for cardiac rhythm abnormalities: American College of Cardiology Foundation (ACCF)/American Heart Association (AHA)/Heart Rhythm Society (HRS) Focused Update of the 2008 Guidelines for Device-Based Therapy of Cardiac Rhythm Abnormalities (2012)
• Hypertrophic Cardiomyopathy: American College of Cardiology Foundation (ACCF)/American Heart Association (AHA) Guideline for the Diagnosis and Treatment of Hypertrophic Cardiomyopathy (2011)

*Co-authored by Dr. Michael J. Ackerman; Article referenced in charts on Disease Overview page

Scientific Statements:

• Wearable Cardioverter-Defibrillator Therapy for the Prevention of Sudden Cardiac Death - A Science Advisory From the American Heart Association (AHA)
• Eligibility and Disqualification Recommendations for Competitive Athletes With Cardiovascular Abnormalities: Task Force 12: Emergency Action Plans, Resuscitation, Cardiopulmonary Resuscitation, and Automated External Defibrillators - A Scientific Statement From the American Heart Association (AHA) and American College of Cardiology (ACC)
• Expert Consensus on Ventricular Arrhythmias - 2014 European Heart Rhythm Association (EHRA)/Heart Rhythm Society (HRS)/Asia Pacific Heart Rhythm Society (APHRS)
• **Expert Consensus Statement on the Diagnosis and Management of Patients with Inherited Primary Arrhythmia Syndromes - 2013 Heart Rhythm Society (HRS)/European Heart Rhythm Association (EHRA)/Asia Pacific Heart Rhythm Society (APHRS)/American College of Cardiology Foundation (ACCF)/American Heart Association (AHA)/Pediatric and Congenital Electrophysiology Society (PACES)/Association for European Pediatric and Congenital Cardiology (AEPC)

**Article referenced in charts on Disease Overview page