SADS 20th Anniversary Logo
SADS and PACES Partnership Continues to Grow at HRS

We had a tremendously successful Heart Rhythm Society Meeting in Boston this year!  SADS participated on the program committee for the PACES Pre-Conference Seminar entitled "Sudden Cardiac Death and the Rest of the Family". 
Dr. Etheridge, Dr. Cannon, & Dr. Cohen
Dr. Etheridge, Big Flat Bob, Dr. Cannon & Dr. Cohen

We also sponsored the seminar and Alice Lara and many SADS Advisors, spoke. It was another successful PACES Pre-Conference seminar and we congratulate everyone who worked hard to put this together-especially Stu Berger and Bryan Cannon who co-chaired the committee and Susan Etheridge-who took the money and made the arrangements.

We congratulate Dr. Susan Etheridge on her induction as the new President of PACES and also to thank Dr. Peter Fischbach for his great efforts throughout the past year. SADS and PACES recognize the collaborative power of our continued commitment to benefit patients and families whose lives have been touched by SADS conditions. We will continue to partner in unique and effective ways to bring medical education, awareness and family support and care to our communities.

SADS Responds to Sudden Death

We've been responding to the sudden death of children and young adults all over the country that we hear about through the media, SADS families and, now, via healthcare providers like you who understand the important role we can play in these tragic scenarios. We are proud of the success of this program and want you to know that we're here to help when you see a sudden, tragic death in your community.

We received an email from Dr. Jim Perry right after HRS: "I saw this in the local online paper this morning and was hoping you guys could do your great detective work that we can't do... I checked our hosp records and found nothing." We immediately contacted the ME in the San Diego area (this young man died suddenly while playing basketball at school) who we've worked with before. The ME was receptive to our call and also agreed to pass information to the family. We were also able to reach the school staff and the local media who had done the story. We encourage TV/newspapers to do a follow up story and Jim will be the "local expert" if they do so. We hope this family will get their other two children to Dr. Perry soon for evaluation.

Thank you to Dr. Perry for supporting the SADS Sudden Death Response Plan and helping us support these families. Please join our efforts and let us know about SCD cases in your community. With your help, we can act quickly during the first critical hours to contact medical examiners and support the family and the community.


Family Care Model

As you all know, when diagnosing and treating SADS conditions, you need to work with the whole family. While at HRS, we had the pleasure of speaking with several physicians about how they evaluate families with suspected SADS conditions. We were pleasantly surprised to learn that many facilities have adopted a model for more complete family care. In some cases the Pediatric EP (seeing the children in the family) and the Adult EP (seeing the parents) meet together to discuss the entire family. Others have a regular multidisciplinary clinic. Still other physicians see the entire family even though they are Pediatric EP physicians. Do any of these models sound like your practice? Do you have a similar family care model? Have you partnered with either your adult or pediatric counterpart? If so, we would love to hear about it. We will be collecting information and presenting successful models in future medical education e-newsletters.  Send your information or comments to us at and tell us what works for you..
Dr. Ackerman, N. Boczek,
Dr. Faggioni and Dr. Knollmann
Fifth Annual SADS Foundation Courts K. Cleveland Jr. Young Investigator Awards in Cardiac Channelopathy Research: Award Winners Announced
Partnering with the Pediatric and Congenital Electrophysiology Society (PACES), we awarded the Fifth Annual SADS Foundation Courts K. Cleveland Jr. Young Investigator Awards in Cardiac Channelopathies during the PACES meeting at the Heart Rhythm Society Annual Sessions in Boston.  We would like to thank all those who applied for the award for their hard work and incredible submissions.  The winner of the Basic Science category was Nicole Boczek, a Ph.D. student at the Mayo Clinic Graduate School.  Nicole's mentor for her submission was Michael Ackerman, M.D., Ph.D. and the title of her manuscript was "Exome Sequencing and Systems Biology Converge to Identify Novel Pathogenic Substrates for Autosomal Dominant Long QT Syndrome".  The award for Translational Science was presented to Michela Faggioni, M.D., a Research Fellow from Vanderbilt University Medical Center.  The title of her manuscript was Accelerated sinus rhythm prevents CPVT in patients and in a mouse model, and her mentor for this submission was Bjorn Knollmann, M.D.  Once the manuscripts have been accepted and published, we will make their content available on our website at

Stay tuned for the Sixth Annual SADS Foundation Courts K. Cleveland Jr. Young Investigator Awards in Cardiac Channelopathy--for information on submission requirements and deadline dates announced this fall.  Winners receive a $500 award as well as $1,250 to their institution to offset the costs associated with attending the HRS annual meeting.  

A special thank you to Dr. Charles Berul and the entire PACES evaluation committee for reviewing the numerous entries received this year.

Learn More...

First Ever PACES Consensus Document:

PACES/HRS Expert Consensus Statement on the Management of the Asymptomatic Young Patient with a Wolff-Parkinson-White (WPW, Ventricular Preexcitation) Electrocardiographic Pattern.

 The expert consensus statement was presented at Heart Rhythm and provides first-of-its-kind clinical practice guidelines on the evaluation and management of asymptomatic young patients with a WPW electrocardiographic pattern.

The worldwide writing group, with members from both societies, deemed the following as the evidence-based recommended practice for asymptomatic young patients with WPW electrocardiographic pattern:

  1. An exercise stress test, when the child is old enough to comply, if he or she exhibits persistent pre-excitation. 
  2. In patients with intermittent pre-excitation, establish oversight by cardiologist who should provide counseling and symptom awareness. 
  3. In those whose non-invasive testing shows persistent or uncertain loss of pre-excitation, perform diagnostic transesophageal or intracardiac electrophysiology study. Based on the results of the electrophysiology study, there may be either a recommendation for an ablation or continued awareness and observation for symptoms. 
  4. Patients with WPW and structural heart disease are at risk for both atrial tachycardia and atrioventricular (AV) reciprocating tachycardia and should consider ablation. 
  5. Asymptomatic patients with WPW and ventricular dysfunction secondary to dyssynchronous contractions may consider ablation. 
  6. Young patients with asymptomatic WPW may be prescribed attention deficit disorder (ADD) medications. This recommendation follows the American Heart Association (AHA) guidelines. 
The consensus statement has also been endorsed by the American College of Cardiology (ACC), the AHA, the American Academy of Pediatrics (AAP) and the Canadian Heart Rhythm Society (CHRS), and will be published in the June 2012 edition of HeartRhythm.

Fetal Heart Rate/Gestational Age Predicts LQTS - HRS Poster

 A poster presented at this year's HRS meeting was entitled "Shades of Bradycardia: Fetal Heart Rate Predictors of Long QT Syndrome".  Authors Jason Mitchell, MD, D. Woodrow Benson, MD, Ph.D., Susan Etheridge, MD, Janette Strasburger, MD and Bettina Cuneo, MD aimed to compare fetal heart rate (FHR)/gestational age(GA) profiles of fetal LQTS to normal, develop FHR criteria to improve recognition of LQTS in the fetus and identify CA-specific or mutation-specific RHR predictors of LQTS.

With the help of the SADS Foundation, researchers collected data from 547 normal fetuses as well as 42 fetuses with LQTS (group 1 with a family history and group 2 with fetal arrhythmias).  Their data concluded that there are "Shades of Bradycardia" in the fetal LQTS population and that fetuses with the lowest FHR/GA profiles are more likely to have complex arrhythmias or de novo mutations.  The use of gestational age along with fetal heart rate improves the diagnosis of LQTS in the fetus from 15% to 66% as compared to FHR only.  LQTS should be suspected in fetuses with FHR repeatedly <3rd percentile for GA even if there is no other arrhythmia.  The authors suggest that these findings should improve the detection of LQTS in fetuses at all gestational ages.
More HRS (Heart Rhythm Society) 2012 Successes!

SADS Hosts Lunch for Cardiac Genetic Counselors at HRS
NSGC Cardiac SIG
New for us this year at HRS was a fantastic lunch meeting with the National Society of Genetic Counselors (NSGC) Cardiac SIG group. Watch for unique and collaborative projects in the future from this amazing group.
Dr. Sanatani
Dr. Sanatani dancing with Big Flat Bob

SADS Scientific Advisors Meet

SADS experts from around the world met to discuss channelopathies (what's new), SADS research agenda and the updating of our Screening Policy. Led by Dr. Michael Ackerman, the meeting was very productive and led to, among other things, a task force being formed to update.

SADS Family Meeting: Living and Thriving With the Risk of Sudden Cardiac Death
On Saturday, the SADS Foundation co-sponsored a Family Meeting with the Sudden Cardiac Arrest Association (SCAA), Mended Hearts and HRS.

Click here for more information-as well as great pictures.
ICD Registry Data: ICD Not a Complete Barrier to Playing Sports

New data from the ICD Registry suggests that an ICD is not an absolute contraindication to playing competitive sports.  372 competitive athletes were followed in this study during a 3 year follow up period with no deaths or adverse events reported.  Dr. Rachel Lampert from Yale University led a special late-breaking clinical trials session at HRS to discuss the results of this multinational registry.  The registry enrolled athletes who had been competitive prior to receiving an ICD and then returned to their sport post implantation.  Some participants did in fact receive shocks during participation, however, no shock related deaths or injuries were reported.  The lead malfunction rate was 3% at 5 years and 10% at 10 years.  It is important to note the multiple shocks did occur during sports participation. However, in most cases, the athlete returned to practice or competition following the shock.
SADS Medical Education Programs

Please contact Christine Fontanella at if you are interested in working with us to bring medical education to your hospital or facility

SADS in Washington, DC
Last month, Dr. Michael Ackerman participated in multiple SADS sponsored medical education seminars in the D.C. area.  Special thank you to Dr. Charlie Berul for helping us pull together these important programs.  Also thanks to Transgenomic, Inc. and Medtronic for providing the SADS Foundation with unrestricted grants which made these programs possible and to Tuscana West for partnering with us and providing a terrific venue.

SADS in Chicago, IL
Thanks to Dr. Ackerman and Transgenomic, Inc. (unrestricted educational grant) for the great seminars in the Chicago area.

SADS in Boston, MA
Special thanks to Dr. Edward Walsh for helping the SADS Foundation bring a medical education seminar to Boston Children's Hospital.  Dr. Ackerman gave a lecture on cardiac channelopathies to many interested physicians and healthcare providers, followed by a program with the cardiac fellows.  Thank you to Transgenomic, Inc. for their unrestricted educational grant. 

 Learn More...
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