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Thu, Jan 16 2:10pm · Mayo Clinic's Windland Smith Rice Sudden Death Genomics Laboratory has made a new discovery! in Genetic Heart Rhythm Diseases

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Photo credit: Post Bulletin/Joe Ahlquist (jahlquist@postbulletin.com)

We at Mayo Clinic’s Windland Smith Rice Genetic Heart Rhythm Clinic are proud to announce that the Windland Smith Rice Sudden Death Genomics Laboratory published a new discovery in the journal JAMA Cardiology!

As many of you know, Dr. Ackerman is constantly performing research studies to further our understanding of genetic heart rhythm diseases. If you’ve had an appointment with him in the Windland Smith Rice Genetic Heart Rhythm Clinic, you were probably asked to participate in a research study yourself. Research takes years, sometimes decades, to come to fruition. But the results can be lifesaving.

This recent discovery is exactly that. Fifteen years after an Amish family lost their first of eventually four daughters to sudden cardiac death, an answer was finally found. A duplication of over 300,000 nucleotides in the RYR2 gene, a gene responsible for Catecholaminergic Polymorphic Ventricular Tachycardia (CPVT), was causing what the family eventually began referring to as “the curse of sudden death”.

For more information, check out these articles:

See our Genomics Laboratory tab for more information on current research studies being performed in the Windland Smith Rice Sudden Death Genomics Laboratory. Check out the Heart Rhythm Conditions group to join discussions and read other people’s opinions with genetic heart rhythm disorders.

Nov 18, 2019 · Nadolol Efficacy and the Risk of Limiting Access to this Life-Saving Medication in Genetic Heart Rhythm Diseases

Hello @gregaboy69 :

I am very sorry to hear that you were disappointed with your visit to Mayo Clinic. If you have a medical question specific to yourself, you may contact your medical team via the Patient Portal. If you do not have your Patient Portal set up yet, you can create your account online or through the Mayo Clinic app. Otherwise, you may message me directly and I can further assist you in finding the answer you are looking for.

Sincerely,
Katrina Sorensen

Nov 13, 2019 · Nadolol Efficacy and the Risk of Limiting Access to this Life-Saving Medication in Genetic Heart Rhythm Diseases

Medications

Imagine this: You’ve been diagnosed with a rare genetic heart rhythm disorder that, left untreated, can cause serious symptoms such as syncope, seizures, and even sudden death. Luckily, early diagnosis by your cardiologist has led to the effective management of your condition with a simple once-a-day dose of medication. You’ve been assured that your risk of sudden death is extremely low due to this life-saving medication. But, standing at the pharmacy counter, you are told that this prescription is no longer covered by your insurance. What do you do?

Unfortunately, for patients with congenital long QT syndrome (LQTS) and catecholaminergic polymorphic ventricular tachycardia (CPVT), this scenario is becoming more and more common. Beta-blocker medication represents the therapeutic mainstay for the prevention of CPVT- and LQTS-triggered arrhythmias which can lead to sudden cardiac death. In the Windland Smith Rice Genetic Heart Rhythm Clinic and most of the largest LQTS/CPVT specialty centers throughout the world, the specific beta-blocker nadolol has been preferred and used for the past 27 years.1 However, this highly preferred and effective medication is being increasingly denied by insurance companies in favor of other beta-blockers such as metoprolol, atenolol, or propranolol.

This therapeutic paradigm is under threat in several countries, despite being recognized by channelopathy experts around the world, and the drug is at risk for disappearing from the market. The impact of this development could be profound.1

Michaela Saunders, the nurse in the Windland Smith Rice Genetic Heart Rhythm Clinic has experienced this first hand. “I recently spent two hours on the phone with an insurance company appealing a nadolol denial for a patient,” she explained. “It’s frustrating. This is a life-saving medication and there is not a better alternative medication for our patients to take.”

Insurance companies often base their denials on the lack of concrete data supporting the use of nadolol versus other beta-blockers. Currently, there are no randomized clinical trials (RCTs) that compare the efficacy of different beta-blockers for the treatment of LQTS or CPVT. It is also unlikely that these studies will ever be performed because there is no driving incentive for a randomized trial for this class of medication to treat these uncommon disorders.1 Yet, this is a common problem among rare diseases. This explains how practice guideline development may accept expert opinion, small single-site studies, and registry data.1 It also shows the importance of looking to and relying on expert opinion and the experiences of LQTS/CPVT specialists for guidance.

Thus, there is substantial consensus among experts around the world that nadolol is the preferred effective drug therapy in LQTS and CPVT and should be administered as a first-choice therapy.1

The implications of not having access to nadolol for LQTS and CPVT patients would be substantial. The Heart Rhythm Society (HRS) is concerned that if nadolol becomes difficult to obtain or unavailable, patients with LQTS or CPVT will be at greater risk for sudden death, and that clinicians will be forced to consider otherwise unnecessary and more aggressive treatment options such as an implantable cardioverter-defibrillator (ICD).1

When pressed on what is advised if nadolol is simply not available, Dr. Michael J. Ackerman, director of the Mayo Clinic Windland Smith Rice Genetic Heart Rhythm Clinic, says he likes and prescribes propranolol and its extended release preparation (propranolol ER) a lot. However Dr. Ackerman highly urges physicians against other beta-blockers. In his own words, “please DO NOT prescribe either atenolol or metoprolol for patients with either CPVT or LQTS!”

Dr. Ackerman and the Windland Smith Rice Genetic Heart Rhythm Clinic believe this issue needs to be heard. Nadolol needs to continue to remain easily available for patients with LQTS and CPVT. It can literally be the difference between life and death.

References

Ackerman, M., Priori, S., Dubin, A., Kowey, P., Linker, N., Slotwiner, D., Triedman, J., Van Hare, G. and Gold, M. (2017). Beta-blocker therapy for long QT syndrome and catecholaminergic polymorphic ventricular tachycardia: Are all beta-blockers equivalent?. Heart Rhythm, 14(1), pp.e41-e44.

Nov 1, 2019 · ALERT: Flu season is here! Get your vaccination today! in Genetic Heart Rhythm Diseases

Flu Shot

The cold weather is here and the flu season is officially underway. Sadly, during the 2017-2018 flu season nearly 200 children died from influenza while thousands more were hospitalized. This, however, can be prevented. The flu shot is the most effective way to prevent influenza and its complications. Currently, the Centers for Disease Control and Prevention (CDC) and the American Academy of Pediatrics (AAP) recommends that everyone 6 months of age or older should be vaccinated annually against influenza.

A common concern among our patients is whether or not the flu shot is harmful to patients with genetic heart rhythm disorders. Dr. Michael J Ackerman, a genetic cardiologist and the director of Mayo Clinic’s Windland Smith Rice Genetic Heart Rhythm Clinic firmly believes that the benefits of getting immunized against the flu far outweigh the risks. Visit our previous post regarding the flu vaccination and genetic heart rhythm diseases to read more and watch a video Dr. Ackerman created to discuss the benefits of immunizations.

In addition to getting your flu shot, remember to practice good hygiene as another safeguard against the flu season.

  • Wash your hands often and thoroughly with soap and water
  • Use an alcohol-based sanitizer on your hands if soap and water aren’t available
  • Avoid touching your eyes, nose or mouth whenever possible
  • Avoid crowds when the flu is most prevalent in your area
  • Get plenty of sleep, exercise regularly, drink plenty of fluids, eat a nutritious diet, and manage your stress

Helpful links:

  • Learn more about the flu vaccine and flu season
  • Visit the CDC website for key facts, benefits, and more information about the seasonal flu vaccine
  • Find out where to get your vaccination locally

Sep 25, 2019 · Artificial intelligence could help diagnose a deadly heart condition in Genetic Heart Rhythm Diseases

AI-Health

This story originally appeared on cnbc.com and was written by Angelica LaVito.

Have you ever felt your heart racing? For most people, this is a normal reaction to things like exercise, fear, stress, anger and even love. Your heart’s electrical system is sped up due to your “fight or flight” instincts. When you cease your activity or calm your emotions, your heart resumes it’s natural rhythm.

For some, though, that’s not always the case. In an estimated 1 in 7,000 people, these triggers can cause dangerously fast and irregular heartbeats, called arrhythmias, which can lead to fainting, seizures and even sudden cardiac death. Often times, this stems from a genetic heart rhythm disorder known as long QT syndrome. Due to is relative rarity, long QT syndrome often goes undetected until symptoms present themselves.

This was the case for Abrielle Watschke. Unbeknownst to her family, Abrielle was born with long QT syndrome.  At the age of 2, while at home with her family, Abrielle experienced cardiac arrest. Thankfully, her father was able to initiate CPR and an ambulance quickly arrived, reviving Abrielle.

AliveCor, a medical device start-up company, and Mayo Clinic are hoping to be able to more easily detect long QT syndrome before tragic stories like Abrielle’s occur. A recent study conducted by the Genetic Heart Rhythm Clinic on one of AliveCor’s artificial intelligence devices found the technology was able to accurately diagnoses long QT syndrome 79 percent of the time.

Read more about this new technology and Abrielle’s story on the CNBC website.

Mayo Clinic is an investor in AliveCor

Sep 16, 2019 · Return to Play Considerations for Athletes with Genetic Heart Rhythm Diseases in Genetic Heart Rhythm Diseases

Basketball

Being told that you or a member of your family can no longer participate in sports due to a genetic heart rhythm condition can be devastating. Over the past several years, the idea that patient’s with GHDs should be immediately and indefinitely be disqualified from sports is slowly starting to shift.

Dr. Michael Ackerman, the director of the Windland Smith Rice Genetic Heart Rhythm Clinic, strongly believes that the decision to return to sports should be a shared decision between the athlete, their family, coaches and physicians. Many things need to be discussed and considered before an athlete should return to participation, including the five essential return to play considerations detailed in the Competitive Sport Athletes and Genetic Heart Diseases video on the Video Archive tab.

The 50-minute video lecture below details the evolution from “If in Doubt, Kick them Out” to “Shared Decision Making” when it comes to athletes with a variety of Genetic Heart Diseases and their ability to safely return to or continue in the competitive sports.

Check out the Heart Rhythm Conditions group to join discussions and read other people’s opinions with genetic heart rhythm disorders about returning to sports.

Sep 4, 2019 · Mayo Clinic Q and A: Understanding and treating long QT syndrome in Genetic Heart Rhythm Diseases

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Have you ever wondered what long QT syndrome is? Unsurprisingly, a lot of people have never even heard of this genetic heart rhythm disease.

In the following Mayo Clinic Q and A, Dr. Michael Ackerman, a genetic cardiologist and director of the Windland Smith Rice Genetic Heart Rhythm Clinic, explains what long QT syndrome is, how its diagnosed and how its treated.

Meet other people talking about long QT syndrome on Mayo Clinic Connect. Join the Heart Rhythm Conditions group or the Heart & Blood Health group to join the conversation, share experiences, ask questions and discover your support network.

Aug 30, 2019 · Post Visit III - Dr. Ackerman's Story in Genetic Heart Rhythm Diseases

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Have you ever wondered how Dr. Michael Ackerman, a genetic cardiologist and director of Mayo Clinic’s Windland Smith Rice Genetic Heart Rhythm Clinic, became interested in genetic heart rhythm disorders? In this video, Dr. Ackerman describes how he became who he is today. From fainting while watching a surgery at age 14, to attending Luther college and having to choose between medicine and the ministry, to attending Mayo Clinic Medical School, and finally to meeting the patient that changed his career trajectory forever, you’ll get to know who Dr. Ackerman is and why he does what he does.