171 Ashley Ave.
Charleston, SC 29425
843-792-1414
800-424-MUSC
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Pediatric Heart Network
The Pediatric Heart Network (PHN) is a collaboration of clinical sites and a
data coordinating center that conduct research studies in children with
congenital or acquired heart disease. The PHN was created and funded in 2001
by the National Heart, Lung and Blood Institute to improve outcomes and
quality of life in children with heart disease. Seven centers with experienced
research teams at hospitals that specialize in the care of pediatric patients
with heart disease were chosen to become part of the PHN.
Congenital cardiovascular malformations affect approximately 40,000 infants in
the United States each year, and are a leading cause of infant death. The
incidence of congenital heart disease is at least triple that of childhood
cancers, and is substantially greater than pediatric AIDS. In the past 25
years, fewer than 40 randomized clinical trials have been carried out in
patients with congenital or acquired heart disease, and nearly half of these
dealt only with a patent ductus arteriosus in preterm infants.
The major barriers to clinical studies in pediatric heart disease include the
variety of conditions, the small numbers of individuals with a particular
congenital heart defect at any one center, differences in treatment approaches
between centers, absence of systematic centralized databases, and lack of
resources to provide national coordination of collaborative efforts. Additional
barriers relate to parents being unaware of studies, living a distance from a
research site, or lacking familiarity with what happens during a study.
The Network approach attempts to address these barriers by offering an
effective, flexible way to study adequate numbers of patients with uncommon
diseases through a common infrastructure for recruiting, monitoring, and
following patients whose conditions will be characterized in a standard
fashion. A collaborative effort through a clinical research Network is the most
scientifically sound and cost-effective way to overcome the current barriers and
to provide the information needed to bring evidence-based medicine to bear on
children with heart disease. The Network also provides a platform to train junior
investigators in pediatric clinical research, and serves as a vehicle for rapid
and widespread dissemination of findings.
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