North American Registry for Fibromuscular Dysplasia

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          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 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 a 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, outcomes in patients with FMD, and to provide recommendations for best practices in caring for patients with FMD.

                 MCORRP is the coordinating center for the North American Registry for FMD.  The registry began initially with seven  sites, with data entry from the first patient in 2009.  There are now 21 active sites (including one in Canada) and more than 5,000 patients in the registry, including over 14,500 follow-ups in the database.  The initial findings of the registry were reported in Circulation in 2012. Since then, 14 manuscripts, including a patient page, and 21 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 is focusing on long-term outcomes in patients with FMD, outcomes of vascular interventions, effects of hormones, differences in treatment/outcomes based on ethnicity, and the role of genetics.  The FMD Steering Committee members meet regularly to determine registry and publication priorities. In addition, findings from the registry are presented annually at the FMDSA patient meeting in Cleveland, Ohio. An additional focus was placed on improving the registry’s data quality in 2025, with a goal of utilizing this data to publish several manuscripts in 2026.

                The FMD Steering Committee has recently created several working groups within the registry.  The goal is to encourage increased engagement among all participating sites, ultimately leading to increased academic output and identification of best practices in the diagnosis and treatment of FMD