Marfan Syndrome and Aortopathy Center

The Marfan Syndrome and Aortopathy Center, founded in 1992, is one of the largest clinics in the United States dedicated to the care of adults with heritable thoracic aortic diseases (HTAD) and aortopathies, including Marfan syndrome, Loeys-Dietz syndrome, vascular Ehlers-Danlos syndrome, nonsyndromic HTADs, bicuspid aortic valve with aneurysm, Turner syndrome, aortic dissection, unexplained thoracic aortic aneurysm, and other arteriopathies. This clinic is recognized as a Center of Excellence and provides multidisciplinary care including cardiology and access to medical genetics, cardiothoracic surgery, vascular surgery, ophthalmology, orthopedic surgery, pulmonary/thoracic surgery, and maternal-fetal medicine/high-risk obstetrics. Our cardiothoracic surgeons specialize in complex aortic surgery including valve-sparing root replacement, composite valve-graft surgery, repair of thoracic aortic aneurysms and dissections and mitral valve procedures. Our vascular surgeons specialize in surgery on the aorta and branch vessels and endovascular procedures.

The Marfan Syndrome and Aortopathy Center provides comprehensive evaluation for initial consultation and continuity of care for long term management. Initial evaluation may include detailed cardiovascular and medical genetics assessment, echocardiogram, and ophthalmologic examination in a single visit, depending upon individual circumstances. Referrals to appropriate specialists may also be arranged.  Cardiovascular imaging may include echocardiography, computerized tomographic (CT) angiography or magnetic resonance angiography (MRA). Our center has close ties to the Marfan Syndrome Clinic at St. Louis Children’s Hospital and may provide continuity of care for patients as they transition to adult care.

The Marfan Syndrome and Aortopathy Center at Washington University School of Medicine and Barnes-Jewish Hospital has hosted the Annual Meeting of the National Marfan Foundation on two occasions and is actively involved in research involving heritable thoracic aortic diseases and is part of multiple clinical registries.

Director:  Alan C. Braverman MD

Nurse Coordinators:

Dana Gima, RN (Nurse Coordinator)

Barb Stehman, RN (Nurse Coordinator)

Clinical expertise

The Marfan Syndrome Clinic provides expertise in diagnosis and treatment of many genetically-triggered disorders associated with thoracic aortic aneurysm and dissection including:

• Marfan syndrome
• Loeys-Dietz syndrome
• Bicuspid aortic valve associated with ascending aortic aneurysm
• Familial thoracic aortic aneurysm and dissection syndrome
• Nonsyndromic heritable thoracic aortic disease (HTAD) or familial thoracic aortic aneurysm and dissection disease (FTAA/D)
• Vascular Ehlers-Danlos syndrome
• Turner syndrome
• Aortic dissection
• Thoracic aortic aneurysm
• Aortic disease in pregnancy and aortic dissection related to pregnancy
• Unexplained thoracic aortic aneurysm.

Marfan Syndrome and Aortopathy Center physicians/staff

• Alan C. Braverman MD, Director (Cardiology)
• Farhan Katchi, MD, (Cardiologist)
• Sara Procknow, MD(Medical geneticist)
• Puja Kachroo, MD, (Cardiothoracic surgeon)
• Kevin Blinder, MD (Ophthalmology and the Retina Institute)
• Munish Gupta, MD(Orthopedics/Spine specialist)
• Joshua Osbun, MD (Neurosurgeon)
• Benjamin Kozower, MD (Thoracic surgery/pectus deformities)
• Washington University Specialists: Vascular surgery, Maternal-Fetal Medicine/High-Risk Obstetrics, Cardiovascular Radiology

 Professional collaborations

The Marfan Syndrome and Aortopathy Center is actively involved in multicenter registries and clinical and translational research involving heritable thoracic aortic disease including:

• Professional Advisory Board, The Marfan Foundation
• The Pediatric Heart Network Trial of Atenolol versus Losartan in the Treatment of Marfan Syndrome
• The National Marfan Foundation Registry of Valve-Sparing Aortic Root Replacement
• The International Registry of Acute Aortic Dissection (IRAD)
• The Montalcino Aortic Consortium (MAC)
• Pregnancy and other reproductive outcomes in women with genetic predisposition for aortic dissection (PROWAG)
• Collaborations with physicians at other institutions involving studies of Marfan syndrome, Loeys-Dietz syndrome, bicuspid aortic valve aortopathy and other heritable thoracic aortic disease and familial thoracic aortic aneurysm disease.