Surgery to treat congenital heart disease in children has dramatically improved over the past 20 years. Still, some challenges remain.
While most congenital heart disease patients live beyond the surgery,many experience shortterm challenges such as inflammation and longlasting effects such as neurological problems.
Finding out why these side effects occur—and what can be done about them—is the charge of the Minnesota Congenital Heart Network (MCHN), which was formed with $500,000 from the Minnesota Partnership for Biotechnology and Medical Genomics.
Through the MCHN, University of Minnesota Amplatz Children’s Hospital and Mayo Clinic physicians are comparing notes on heart surgeries and electronically sharing pre- and post-surgery data. By doing so, investigators at both institutions will have a larger, more detailed repository of information from which to conduct clinical research.
“It’s incredibly unique to have cardiac surgeons working together in this way,” says Sheri Crow, M.D., a pediatric intensivist at Mayo Clinic and chair of the MCHN. “It’s exactly what needs to happen in order to improve outcomes in kids with congenital heart disease.”
Funds from the Minnesota partnership will be used to create the infrastructure required to facilitate data-sharing between the two institutions.
“This collaboration drastically expands our ability to acquire information on a small patient population,” says University pediatric cardiothoracic surgeon and collaborator James St. Louis, M.D. “By combining the resources of both institutions, we’ll be better able to provide the best care and outcomes for children undergoing lifesaving heart surgeries.”
In the future, the MCHN—whose collaborators also include Roosevelt Bryant III, M.D., at the University and Joseph Dearani, M.D., and Harold Burkhart, M.D., at Mayo—may work with other data-collection partnerships, such as the Pediatric Cardiac Care Consortium, an international registry directed by University pediatric cardiologist James Moller, M.D., that contains data on pediatric heart surgeries and catheterizations primarily in the United States and Canada.
The idea, Crow says, is to make use of all available data and assemble it in a way that is more usable for clinical research aimed at improving the lives of kids with heart problems.