The University of Minnesota Adult Congenital and Cardiovascular Genetics Center is currently enrolling patients in a registry that will be used to identify genetic variations associated with congenital heart disease and inherited cardiovascular conditions as well as to study the clinical outcomes of individuals with specific conditions. The registry will include information about diagnosis, treatments, outcomes, and family history. Patients may choose to bank DNA samples with the registry.
S. Kimara March, a University of Minnesota Health cardiologist specializing in adult congenital and interventional cardiology, is now seeing patients once a month at the Essentia Health St. Mary’s—Heart & Vascular Center in Duluth. The new appointment hours provide access to care for many northern Minnesota patients who were unable to travel for a consultation. “I’ve already seen several adult patients with congenital heart disease recently who knew they needed follow-up care, but hadn’t seen anyone for 10 years or more,” said Dr. March. “It’s powerful to know that I can help.”
For referrals or information, call the center at 218-786-3443.
There are many barriers to transfer of care to adult providers for young adults with congenital heart disease, and this lack of transition has led to significant gaps in care for patients. The adult congenital cardiology subspecialty was established to meet the needs of this growing patient population. However, a recent review found that access to adult congenital cardiologists and transition of care can still be optimized, as only 20% of adult patients had documented transfer-of-care discussions. The study authors assert that appropriate transfer to specialists in adult congenital heart disease provides an opportunity to reinforce the importance of regular follow-up in adulthood and may improve outcomes.
University of Minnesota Heart Care physicians Jennifer F. Gerardin, MD, Cindy M. Martin, MD, and Jamie L. Lohr, MD, served as co-authors on the publication.
With the successes in pediatric care, the number of adults with congenital heart disease or inherited cardiovascular conditions has greatly expanded, and these adults often have unique healthcare needs.Continue reading
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