US Registry for Fibromuscular Dysplasia

FMD logoFibromuscular 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 through imaging 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. 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. The registry began initially with 7 sites with data entry from the first patient in 2009. As of April 2019, there are 15 active sites and more than 2,411 patients in the registry, including over 6,184 follow-ups in the database. The initial findings of the registry were reported in Circulation in 2012. Since then, 13 manuscripts, including a patient page, and 20 abstracts have been published or presented at national meetings. In addition, several studies focusing on quality of life in patients with FMD have been conducted and published by researchers at MCORRP. Current work continues to describe outcomes in patients with FMD. Additionally, international FMD investigators collaborating with the US Registry have published the first international consensus paper on the diagnosis and management of FMD

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Please Contact the Project Manager for Further Information:

Project Manager:

Eva Kline Rogers, RN, MSN, NP (734) 998-5909

FMD Steering Committee

Investigators:

Additional Resources

Fibromuscular Dysplasia Society of America(FMDSA)

FMD Patient Resources