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Patient-Physician Relationships: Carrying SADS Mission to Greater Heights

Physicians and patients of Long QT and other SADS conditions share a unique bond.  By putting their faith in a physician, families are entrusting the life and well-being of their children or loved-ones to them.  They rely on that physician to know about and care about their case and expect that physician to have the latest and greatest medical information regarding their particular condition.  Thankfully, at the SADS Foundation, we have those world expert physicians on-board with us, ready to accept a referral case, weigh in on a difficult case or provide up-to-the minute experience and data.

There is a new trend that is developing due to the trust between our physicians and their patients; one of philanthropy and support.  Take for instance, Shannon Kiss - a Georgia woman who lost her beloved husband Wayne to Long QT.  Robert Campbell (Children's Hospital of Atlanta) reached out to us when they first started seeing Shannon's daughter to provide support and to help reinforce their discussions about treatment.  She bonded with the SADS staff and organized a phenomenal event--which is now annual. And Dr. Campbell and his staff not only came to her event but helped make it a success--both in community awareness and funds raised! 
The Tambone Family in Phoenix, upon the LQTS diagnosis of their sweet boy, Brayden, turned to their physician for more help.  Dr. Mitchell Cohen (Children's Hospital of Arizona) immediately referred them to the SADS Foundation and supported the Tambones desire to put together a community event.  Through this partnership, Brayden's Buddy Golf Tournament was formed, planned, attended by and supported by Dr. Cohen and his entire team, and thousands of dollars were raised for the SADS Foundation!

Countless examples of physicians partnering with Long QT patients to raise awareness and funds for the SADS Foundation are showing up all around the country.  Do you have a special patient that would benefit by organizing an event with a little encouragement from you and support from the SADS Foundation? Putting those families in touch with the SADS Foundation for help and support is one of the most effective ways to raise awareness of these rare diseases, and raise funds for the life-saving work of the SADS Foundation.  Call us at 800-STOP-SAD, or e-mail Laura Wall for more help.

Physician Referral Network Online (Coming Soon!)

We are getting closer to the publishing of our physician referral list online, providing our families with the names of qualified specialists in their area. The practice of referring families to local healthcare providers is nothing new for the SADS Foundation. However, an online access will be a great new tool for community.  
Thank you to all who have completed our Physician Referral Network Questionnaire!  PACES was kind enough to share a Survey Monkey link with its members and the response was fabulous!  If you wish to be included in this network and have your information published, please click here and complete the questionnaire.  In order to have your information listed on our site, you must complete the survey.   If you have any questions, feel free to e-mail Christine Fontanella or call 203.640.8683.

Learn More... 

Sports Participation Research from The Journal of American Medicine

In this brief, but important, research paper entitled "Competitive Sports Participation in Athletes With Congenital Long QT Syndrome", published online July 21, 2012 in JAMA, authors Dr. Jonathan Johnson and Dr. Michael Ackerman discuss results from a study of 353 LQT 1-3 patients evaluated at the Mayo Clinic.  Records were reviewed for athletic participation after their LQTS diagnosis and LQTS-related events during a mean follow up of 5.1 years.  The authors describe their approach at the Mayo Clinic providing athletes and their families with sufficient information to enable an informed decision about sports participation after their diagnosis of LQTS.  Click here for information about the care and counseling that each family receives as well as tailored therapy administered.  Of note, each sports participant was also proscribed an external defibrillator.  Results found that of the 353 patients, the majority (223, 63%) either were not involved in sports or chose to discontinue sports after evaluation.  130 patients (37%) chose to remain competitive athletes, including 20 with ICD's.  Of these, 70 athletes were competing contrary to European guidelines, but within Bethesda guidelines and 60 were contrary to both guidelines.  The first group described had no sports-related events, and only 1 athlete contrary to both guidelines received 2 appropriate VF terminating shocks.  It should be noted, however, that these episodes occurred in the setting of admitted beta blocker non-compliance.  The authors close with the following comment: "Although many individuals with LQTS will choose to remain in competitive sports, athletes and their families are capable of self disqualification. With more than 650 athlete-years of follow-up, the authors report a low rate of LQTS triggered cardiac events during sports. Limitations include the small sample size, limited length of follow-up and unknown generalizability."

Learn More...

Expert Panel Discussions

SADS group of Scientific Advisors is an impressive list of the world's leading experts in cardiac channelopathies and other SADS conditions.  Recently, we have had an increasing number of physicians submitting difficult case studies and specific questions for discussion amongst our knowledgeable group of experts.  Through this process, physicians receive cutting edge information and advice on the management of their difficult case.  Here's an example of a specific question submitted by one of your colleagues:

For a Long QT mother on beta-blockers for LQTS:
  1. Are there any special tests during pregnancy for the baby?  (i.e. extra ultrasound for growth monitoring).
  2. Do you continue the same betablocker if the mother is breastfeeding? (Nadolol is excreted in breast milk).
  3. Does the baby need any extra monitoring for hypoglycemia presuming there is no indication to place the baby on a beta blocker immediately?  
Specific responses from our panel were provided to this physician, however, here is the short summary of their responses:

It seems unanimous that our panel recommends continuation of beta-blocker therapy during pregnancy and post-natal, even while the mother is breast feeding.  Nadolol and propranolol seem to be the beta-blockers of choice, with warnings being given about safety issues with metoprolol.  No special testing during pregnancy for the baby was recommended and monitoring for hypoglycemia may not be necessary.

If you have a specific question or a difficult case study that you would like to share with our panel, please contact Christine at

Electrocardiogram screening for disorders that cause sudden cardiac death in asymptomatic children: a meta-analysis

Pediatric sudden cardiac death (SCD) occurs in an estimated 0.8 to 6.2 per 100,000 children annually. Screening for cardiac disorders causing SCD in asymptomatic children has public appeal because of its apparent potential to avert tragedy; however, performance of the electrocardiogram (ECG) as a screening tool is unknown. This study estimated (1) phenotypic (ECG- or echocardiogram [ECHO]-based) prevalence of selected pediatric disorders associated with SCD, and (2) sensitivity, specificity, and predictive value of ECG, alone or with ECHO.

This study identified and screened 6954 abstracts, yielding 396 articles, and extracted data from 30. Summary phenotypic prevalences per 100,000 asymptomatic children were 45 (95% confidence interval [CI]: 10-79) for HCM, 7 (95% CI: 0-14) for LQTS, and 136 (95% CI: 55-218) for Wolff-Parkinson-White. The areas under the receiver operating characteristic curves for ECG were 0.91 for detecting HCM and 0.92 for LQTS. The negative predictive value of detecting either HCM or LQTS by using ECG was high; however, the positive predictive value varied by different sensitivity and specificity cut-points and the true prevalence of the conditions. Results provide an evidence base for evaluating pediatric screening for these disorders. ECG, alone or with ECHO, was a sensitive test for mass screening and negative predictive value was high, but positive predictive value and false-positive rates varied.


Rodday AM, Triedman JK, Alexander ME, Cohen JT, Ip S, Newburger JW, Parsons SK, Trikalinos TA, Wong JB, Leslie LK.

Pediatrics. 2012 Apr;129(4):e999-1010. Epub 2012 Mar 5. Review.

PMID: 22392183


More from the Q2 Lit Review...

SADS Safe Schools Month

It's back to school season and you may hear about the annual SADS Safe Schools Campaign from your patients!  This campaign will take place in September with materials focused on keeping students safe at school including CPR training, care plans, and Flat Bob!  

You can help by 1) making sure all your SADS patients have a current SADS Care Plan in place at school 2) encouraging your patients and families to sign up and order materials for their school(s) today!  How about ordering packets for your office to distribute to your patients?  As the campaign kicks off in September, we'll be sending more information as well as YouTube videos on all the campaign happenings. Be sure to subscribe to the SADS Foundation's YouTube channel so you don't miss a minute of the action!

If you have any questions, please do not hesitate to email Adrienne Butterwick
or call 800-STOP-SAD. Thank you for all you do to keep your community safe!

Learn More...

Drugs-to-Avoid List Update

The FDA announced that preliminary results from a recently completed clinical study suggest that a 32 mg single intravenous dose of ondansetron (Zofran, ondansetron hydrochloride, and generics) may prolong the QT interval. It has been moved to the list known to cause a cardiac event and should be avoided by patients diagnosed with Long QT Syndrome.

 Learn More...

Recalled St. Jude Leads: Continued

The US Food and Drug Administration yesterday recommended that patients with ICDs connected to Riata leads from St Jude Medical obtain an X-ray or some other diagnostic imaging to check for possible lead-insulation problems that may require extraction. A two-view chest X-ray or fluoroscopy can detect whether the leads poke through the insulation (externalization) or display some other problem.


The FDA, together with St Jude Medical and the Heart Rhythm Society, is not recommending routine removal of any leads due to the risks of surgery. The agency is advising clinicians to consider remote monitoring of patients with Riata or Riata ST leads. They should reprogram the defibrillators to increase the chance of detecting a lead abnormality and turn on the patient alert and remote monitoring alerts as well.


Click here to see the email sent to your patients by the SADS Foundation advising them of this safety alert.


Click here to read the announcement via the FDA.

SADS is Looking for a Board Treasurer

Do you have any patients that you think might be perfect for the role? A CPA or someone with experience running a business is preferred.  Just another way for SADS to partner with your patients.  Let us know if you have a suggestion or feel free to put your candidates in touch with us:

SADS Insurance Survey

The US and Canadian SADS Foundations have teamed up with researchers from the B.C. Children's Hospital for this important study on sudden arrhythmic death syndromes and insurance for individuals with the diagnosis.
What has been the experience for an individual when applying for insurance coverage of any kind since they or a family member have been diagnosed with a SADS condition such as Long QT Syndrome, Brugada Syndrome, etc?

A survey to explore this question has been developed to learn more about the experiences of families and individuals when applying for insurance coverage in Canada and the United States.  Please encourage your patients to take this simple survey and help make the future better for patients with SADS conditions.

Click here to print the flyer for your office... 

SADS School Nurse Champions

The June launch of the SADS School Nurse Champions Program at the National Association of School Nurses (NASN) Annual conference was a huge hit! Over 200 school nurses took the SADS School Nurse Champions Pledge-empowering them to become advocates in their schools for creating the next generation of life-savers and ensuring greater awareness in their community. School nurses will also be asked to advocate for the inclusion of risk assessment questions on their health forms and for the adoption of Medical Emergency Plans, including AEDs, at all schools. Our goal is to have SADS School Nurse Champions in every state- with a total of 300 nurses participating this year. To make your pledge, contact Adrienne Butterwick.

Learn More...
Coming Events: