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Johns Hopkins inHealth

Kasper Center of Excellence for Pediatric Genetic Syndromes with Aortopathy

About Our Work

Vision
Personalized evaluation, counseling, and management of patients with heritable aneurysm conditions. Data derived from the JHH Cardiovascular Connective Tissue Disorders Clinic has already led to the development and widespread use of guidelines for the care of Loeys Dietz Syndrome (LDS) patients. Through the integration of many new sources of data, this project will both refine and extend our ability to anticipate and prevent morbidity and mortality in inherited aneurysm conditions including LDS, Marfan syndrome, Vascular Ehlers-Danlos syndrome (vEDS, VEDS, previously known as EDS type IV), and others.

Mission
Current practice guidelines are based on what is best for the average patient with an inherited aotopthy. Our mission is to be able to answer: What is best for the patient sitting in front of me right now?

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Pediatric Genetic Syndromes with Aortopathy Research and Precision Medicine

Questions we're asking that inform us on how to best care for patients include:

Tailor

Can we improve patient outcomes by tailoring the timing of aortic surgery to the characteristics and needs of specific individuals?
scalpel and clamp

Predict

Can we anticipate and prevent problems in people with vascular connective tissue disorders rather than simply reacting to them once they are apparent?
doctor with stethoscope

Leverage

Can we learn how nature protects some but not all people with vascular connective tissue disorders and mimic her successful strategies using medications?
DNA strand

Learn

Can we build better tools to visualize and integrate complex information that highlight patterns as they emerge?
dropper

Clinical Trials

Patient Care for Pediatric Genetic Syndromes with Aortopathy

Office Address

Blalock 1008
600 N. Wolfe Street
Baltimore, MD 21287

Phone: 410-955-3071
Fax: 410-367-3231

Clinic Location

The Charlotte R. Bloomberg Children's Center
1800 Orleans St., Room 2201
Baltimore, MD 21287

Center Team

Gretchen MacCarrick, M.S., C.G.C.

Genetic Counselor
gretchen maccarrick