One of Less thn 10 Worldwide, Cardiovascular Genetics Program Thrives

October 24, 2002

A nearly $600,000 federal grant will bolster the Cardiovascular Genetics Program at Golisano Children’s Hospital at Strong, providing improved quality and greater quantity of life to children who have genetically based cardiovascular disease.

The Cardiovascular Genetics Program, part of the hospital’s Children’s Heart Center at Strong, was developed within the last 12 months to provide comprehensive diagnostic evaluations, follow-up testing, counseling, and medical recommendations for children and their families. Steven Lipshultz, M.D., director of the Children’s Heart Center, says there are less than 10 comparable programs in the world.

 “Many medical centers have a geneticist who stops in at the cardiology clinic once every few weeks, but only a handful in the world offer the services of a geneticist assigned solely to work with children who have genetic-based heart problems,” Lipshultz says. “There are several similar programs within a day’s drive - at Boston Children’s Hospital and Mt. Sinai Hospital in New York City - but this grant allows us to significantly enhance our local resources. This is one of the finest pediatric cardiovascular genetics program in the world.”

Members of the Children’s Heart Center will meet with the media at 11 a.m. Saturday, Oct. 26, providing access to their state-of-the-art cardiology equipment. Several families will attend to learn more about how the grant may help their child. They will share their stories with Rep. Louise Slaughter, who secured the congressional grant money.

“We’re especially grateful to Louise Slaughter for obtaining this grant,” Lipshultz says. “For many years, Rep. Slaughter has taken a special interest in improving children’s health, and Golisano Children’s Hospital has been the beneficiary on many occasions.” Last year, Slaughter worked hard to ensure that additional federal resources were focused on care and research involved with children’s health issues.

 In many ways, the Children’s Heart Center is a worldwide leader in pediatric cardiology. It offers the services of pediatric cardiologists; pediatric cardiac surgeons; pediatric cardiac intensivists; pediatric cardiac nurse practitioners; pediatric cardiac nurses; pediatric cardiac social workers; and pediatric cardiac exercise physiologists.

During the last year, the Children’s Heart Center recruited Bonnie Anne Salbert, D.O. - a board-certified pediatric geneticist - who focuses all her time on helping children who have a variety of genetic cardiovascular conditions. As part of the program, Salbert works with cardiologists, nurses, and social workers.

The Cardiovascular Genetics Program provides comprehensive care for fetuses, infants, children, and adolescents who have genetically based heart disease. These disorders include unhealthful heart muscle, such as cardiomyopathy; abnormal heart valves and vessels, such as Marfan’s syndrome; structural heart disease, such as trisomy 21 and DiGeorge syndrome; and abnormal heart rhythms, such as Long QT syndrome.

The grant secured by Slaughter will allow Golisano Children’s Hospital to buy a variety of equipment that will allow doctors to diagnose more easily children who have genetic heart problems. These upgrades include:

 A $15,000 computer workstation and software that allows access to the world-famous London Dysmorphology Database, a diagnostic tool for geneticists. The software enables the user to enter symptoms or clinical findings into a program that searches known and unknown conditions or cases for similarities.

 A $17,000 medical photography system - including still and motion pictures - that allows for better documentation of changes in patient features and response to therapy. Digital pictures enable quick consultation with colleagues worldwide.

 $200,000 worth of echocardiography equipment, which is the primary method for detecting, planning, and following the course and response to therapy for genetic heart disease. The fetal echocardiography program uses specialized probes that enable detection and determination of cardiovascular disease in fetuses.

 Exercise physiology capital-equipment needs that cost more than $30,000. Children who have genetic heart disease may have abnormal heart muscle development and function. The ability to measure the response of the body and heart to exercise is important in children who have heart disease.

Cardiovascular disease in children has gained more attention in recent years. In May, the National Heart, Lung, and Blood Institute released a report titled “Research in Pediatric Cardiovascular Disease.” “Heart disease in infants, children, and adolescents is a large and under-appreciated public health problem,” the authors wrote. “Diseases range from congenital structural defects present at birth to genetic abnormalities of the heart muscle and conduction system, acquired heart diseases, and adult diseases that begin in childhood. Because children have a long life ahead, the burden and cost of children’s heart disease are substantial for families and society. More than one million adults are alive today who had a heart defect repaired during childhood.”

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