-Supraventricular tachycardia (SVT) is the most common heart rhythm abnormality in children.
-Wolff-Parkinson-White syndrome (WPW) is a type of SVT that is associated with sudden death.
-Risk factors and treatment decisions to reduce sudden death in Wolff-Parkinson-White syndrome are based on very limited information.

WPW is common. It occurs in about 1-3/1,000. This is likely an underestimate as there may be children with WPW who have no symptoms and have never had an ECG. Some of these people may never develop symptoms but others may start to notice palpitations and some may have more serious symptoms such as fainting or sudden death. Sudden death may be the first symptom in WPW.

Unlike many other diseases that can cause sudden death in young people, WPW can be treated and even cured.

A presentation of the data collected as part of this collaboration was presented at the Heart Rhythm Society and PACES Research Meetings in Boston in May 2015. At the time of that presentation there were 12 centers from the US, Canada and New Zealand participating and this included 240 patients, cases with a life threatening event and controls who had not had a life threatening event.

The results of the data analysis were remarkable. In 1/2 of the 48 patients with a life threatening event, the life threatening event was the first symptom. Events were more common at rest and with noncompetitive activity so sports restriction are not life-saving in this population. Outcomes from the life threatening event were favorable, but there were 5 deaths. Thus, even in the current era of catheter ablation sudden death is still seen in children with WPW and a lower threshold for catheter of ablation may be needed to prevent life threatening events in children with WPW.

Since that meeting an additional 3 centers have joined and we have retrospective data on 360 patients.
A manuscript of these data is being written.

Future Goals:
We need more information about risk in children with WPW. We will be starting a prospective arm of this research project where data will be collected and patients monitored over time to better help us understand what factors are associated with risk in children with WPW patient.

In a recent study funded by Rock For The Heart at Children’s Hospital in Pittsburgh, PA,  134 children and young adults with Wolff-Parkinson-White syndrome were evaluated by both noninvasive (EKG, 24-hour EKG, exercise stress testing) and invasive testing (electrophysiology study in the heart catheterization laboratory) and the results of these tests were compared.  Twenty-six patients were felt to be at low risk of having life-threatening arrhythmias, although one of these patients (4%) was subsequently found to be at higher risk when evaluated in the heart catheterization laboratory.

The project concluded that noninvasive testing does not absolutely correlate with invasive testing but is a reasonably sensitive method to risk stratify Wolff-Parkinson-White patients.  They suggested that stronger consideration be given toward invasive testing in WPW patients who wish to participate in competitive sports, as this population may have a higher risk of life-threatening arrhythmias.

I am pleased to announce that we have booked the 2011 Golf Outing @ The Chestnut Ridge Golf Resort & Spa in Blairsville, PA. The date of the outing is Friday, June 10th, 2011.

We will be using both golf courses (total of 36 holes). Each group will play an 18 hole scramble. There will be a limited number of rooms available at the resort for Thursday & Friday evening. When we get confirmation of how many and the price, we will send you an update.

Our event has continued to grow! We raised over $40,000 this year. Our goal for 2011 is $50,000!

The research project is moving ahead @ Children’s Hospital. I will provide you with an update at the outing. As I mentioned at the last outing, we have plans to raise additional funds via the music industry. Some exciting things are going on and I will bring you up to date at the outing! We are transitioning the name of the non-profit over to: “Rock For The Heart, Inc”.

We will provide you with the “official” invitation and additional details in the next 30 days.

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