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.  There are now 14 active sites and more than 1,913 patients in the registry, including nearly 4701 follow-ups in the database.  The initial findings of the registry were reported in Circulation in 2012. Since then 19 abstracts, 2 research letters, and 14 manuscripts, and including a patient page 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 on describing outcomes in patients with FMD, prevalence and severity of FMD in the elderly, and prevalence of headaches in this population.  Additionally, international FMD investigators are working to collaborate with the US Registry to identify lessons learned through combining common data elements among the registries

Site Map

 

Project Manager:

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

Project Coordinator

Rachel Krallman
syrachel@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