US Registry for Fibromuscular Dysplasia

Fibromuscular dysplasia (FMD) is a non-atherosclerotic, non-inflammatory vascular disease that most commonly affects the renal and internal carotid arteries but has been described in almost every arterial bed in the body. It may be entirely asymptomatic and discovered incidentally or it may present with a variety of symptoms. In addition, little is known about the prevalence and natural history of FMD.

In 2007, the Fibromuscular Dysplasia Society of America (FMDSA) committed to funding the U.S. Registry for FMD to better understand the disease. The goals of this registry are to identify patient characteristics associated with FMD, potential genetic markers of the disease, commonly used imaging and treatment modalities, and outcomes in patients with FMD. 

MCORRP is the coordinating center for the FMD Registry. Beginning initially with 7 sites, the first patient was entered into the on-line database at the beginning of 2009.  There are now 13 active sites and more than 1,597 patients in the registry, including 3,618 follow-ups in the database. The initial findings of the registry were reported in Circulation in 2012 and over 17 abstracts, 2 research letters, and 2 manuscripts have been published or presented at national meetings. In addition, several studies focusing on quality of life in patients with FMD have been conducted by researchers at MCORRP.

Site Map

 

Site Coordinator:

Eva Kline Rogers, RN, MSN, NP
(734)998-5911
evakline@med.umich.edu

FMD Steering Committee

Jeffrey Olin, DO, FACP, FACC is Chairman

Co-Chair of the Publications Committee

Heather Gornik, MD

Investigators:

Additional Resources

Fibromuscular Dysplasia Society of America(FMDSA)

FMD Patient Resources