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NJ Registry Will Track Sudden Heart Problems Among Youths

Compiling statewide data on cardiac events may lead to ways to better predict problems and reduce risk

When children experience heart attacks or other sudden cardiac problems, it’s often startling and unexpected. A new state law aims to give health officials the information they need to better understand what causes those sudden heart problems and what can be done to lower children’s risk.

The law, S-1911 and A-3047, calls for building a registry of every cardiac event experienced by a New Jersey child.

The registry will include incidents ranging from cases where defibrillators were used on children to instances when children died.

“It’s going to give us some real data as opposed to, ‘maybe we hear about things or maybe we don’t hear about things,’ ” said Dr. Stephen Rice, a cardiologist.

Rice said the law, signed recently by Gov. Chris Christie, will finally allow health officials to understand how and why many of the cardiac incidents are occurring. Until now, “nobody had an answer because nobody was keeping track of these things,” Rice said.

The law also establishes a new state panel that will review each incident. The measure is the latest in a series of bills that stemmed from the work of the New Jersey Student Athlete Cardiac Screening Task Force, which Rice chairs.

The registry data will help determine whether a new requirement that student athletes be screened for heart risks is effective, Rice said.

In addition, the new panel will look for common themes or threads that might point toward new strategies to lower the risk of cardiac events, he said.

Rice credited state Sen. Fred H. Madden Jr. (D-Camden and Gloucester) with pushing the legislation. Madden also sponsored the bill that created the task force, which issued a set of recommendations in a April 2012 report.

“The part that’s remarkable to me is that Sen. Madden in creating the task force didn’t have a specific agenda of what he wanted but he knew this was an issue that was of importance to the state,” said Rice, adding that Madden’s legislative work was “masterful” in working to enact the recommendations within 18 months of the report being issued.

Rice said there is ongoing debate over whether more electrocardiographs or echocardiograms should be used to screen children for heart risks. He said the registry could provide information on whether current screening requirements – which depend on family history and physical examinations -- are sensitive enough to detect students who are at risk.

“Otherwise, we’re working blindly on what we think makes sense,” he said.

Madden said the data will allow a more fine-tuned approach to reducing youths’ risk.

He said he became interested in addressing student athletes’ cardiac risks soon after he joined the Senate in 2004, when a series of young athletes died from undetected heart problems.

After a period of working to coordinate meetings with cardiologists and advocacy groups, Madden decided to sponsor the task force bill enacted in 2009. He noted that task force members were surprised that the Legislature followed up on its recommendations.

“They were really amazed and they felt great that the system actually worked” after seeing the work of other expert task forces ignored, Madden said.

Madden emphasized that the bill is timely.

“With the opening of school this month, there’s a high percentage that we’re going to be reading about another student who’s had a cardiac event during participation in an athletic event,” Madden said. “There hasn’t been a year gone by without something happening.”

Lisa Salberg, founder and CEO of the Rockaway-based advocacy group the Hypertrophic Cardiomyopathy Association, worked closely with the task force on its recommendations. She emphasized that the registry will gather data from all New Jersey children, not just student athletes.

“We don’t know why we aren’t better at identifying those who are at risk,” said Salberg, adding that the new panel will be able to investigate every death to understand each child’s health history, including any signs of problems.

“Over 90 percent of kids who die had one or more risk factors,” but health officials often don’t find out until after the children have died, she said. “We need better state data to really be able to drive that home and have solid answers.”

Salberg said she also hopes that incidents that show up in the registry will be used to screen the children’s family members for heart risks.

“It’s going to help us save families,” she said.

Salberg added that she is hopeful the Legislature would pass another related bill, S-2461, which would require that every child in the state be asked a series of questions about their cardiac health as part of their annual physical exams.

“It really isn’t about athletes, it’s about all children,” Salberg said of the lasting results of the task force’s work.

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