Research Network

The US Registry for Fibromuscular Dysplasia

Beadie FMD Fun Fact:

FMD is a chronic vascular disease that requires lifelong care focused on medical therapy as well as periodic imaging of affected arteries Info Icon

In 2007, the Fibromuscular Dysplasia Society of America (FMDSA) decided to begin a registry to better understand the disease and its treatment. The goals of this registry are to identify patient characteristics associated with FMD, potential markers of the disease, and commonly used imaging and treatment modalities, among others.

Michigan Clinical Outcomes Research and Reporting Program (MCORRP) is the coordinating center for the FMD Registry. Beginning initially with 7 sites, the first patient was entered into the online database at the beginning of 2009. As of February 2020, 15 sites are active and over 2,700 patients are part of the registry. (See all sites listed below)

Since funding to support the registry is very limited, these sites were chosen by a multidisciplinary committee because they treat a large enough number of patients with FMD and thus will be able to rapidly accumulate as much information as possible. As soon as additional funding becomes available, more centers will be added.

To participate in the registry you must be seen as a patient at one of the centers listed below.
Each person agreeing to participate in the registry must first sign a consent form. The consent forms are often lengthy and detailed because they are formatted similarly to those used in clinical research. It’s important to remember that the FMD registry is a data registry only – no experimental research is being conducted. Clinical data is collected in a de-identified manner and placed into a database. Clinical data includes elements such as date of diagnosis, types of tests conducted and results of these tests, past medical history, family history, subsequent clinical events and any clinical outcomes.

All of these data elements are important to determine the natural course of the disease and to determine which procedures are most effective to relieve symptoms and reduce adverse outcomes.

Since patient privacy laws were enacted in 2003, physicians must have individual patients’ consents to place data in a central registry. No names, addresses, social security numbers, or any personal information are included in the registry. Each patient is assigned a unique ID number which identifies individual patients to the treating physician. All staff involved with the registry can identify sites and patients by numbers only. Many measures are taken to secure the information including multiple firewalls, encryption codes, and de-identifiers.

Since FMD is not commonly recognized and often misdiagnosed, the only way to gather enough information to learn how to better diagnose and treat patients is to form a data registry which allows collection of many cases from multiple institutions. With large numbers of cases, physicians can create statistical models that accurately predict which tests/procedures/medications result in the best outcomes.

The initial findings from the registry were published in the medical journal Circulation in 2012. A Patient Page was also published the same year in Circulation. In 2013, an article describing the differences in the disease between men and women was published in the Journal of the American College of Cardiology. In February 2014, an AHA Scientific Statement was published in Circulation, highlighting best practices in the care of FMD and avenues for future research. Researchers have also been able to present many abstracts and posters at national meetings with information gained from the registry. To date, almost 40 manuscripts, abstracts and posters have been published and presented with data from the patient registry.

Thank you to the FMD patients who have participated and to those who donate, together we can make a difference. As we continue to fund the registry we will continue to learn and find answers.

 

As of September 2021, over 3,300 patients have participated in the Patient Registry

Currently there are 17 Participating Registry Centers

FMD Contacts:

J. Michael Bacharach, MD
North Central Heart
Sioux Falls, SD
(605) 977-5000

James B. Froehlich, MD, MPH
University of Michigan
Ann Arbor, MI
(888) 287-1082

Natalia Fendrikova Mahlay, MD
Cleveland Clinic Heart and
Vascular Institute, Cleveland, OH
(216) 444-4420

Heather L. Gornik, MD
University Hospitals Cleveland
Medical Center, Cleveland, OH
(216) 844-3800

Andrew Bryant Dicks, MD
Prisma Health – Upstate
Greenville, SC
(864) 454-8272

Kamal Gupta, MD
University of Kansas
Kansas City, KS
(913) 588-9700

Ido Weinberg, MD
Massachusetts General Hospital,
Boston, MA
(617) 726-2256

Barry Katzen, MD, FACR, FACC, FSIR
Miami Baptist Cardiac/
Vascular Institute, Miami, FL
(786) 596-7050

Kevin Meyers, MD
Children’s Hospital of Philadelphia
Philadelphia, PA
(215) 590-2449

Jeffrey W. Olin, DO, FACP, FACC
Mount Sinai School of Medicine
New York, NY
(212) 241-9454
(212) 427-1540

Aditya Sharma, MD
University of Virginia
Health System,
Charlottesville, VA
(434) 243-1000

Aaron Aday, MD, MSc,
Vanderbilt University Medical Center
Nashville, TN
(615) 322-2318

Bryan J. Wells, MD
Emory University
Atlanta, GA
(404) 686-7878
(404) 778-8440

Eri Fukaya, MD, PhD
Stanford Vascular Clinics,
Stanford, CA
(650) 725-5227

Kevin Rogers, MD
University of Colorado
Aurora, CO
(720) 848-5300

Susan Halbach, MD
Seattle Children’s Hospital
4800 Sand Point Way NE Seattle, WA 98105
206-987-2542

Kambiz Zorriasateyn, MD FACP RPVI
Northshore Cardiovascular Institute
1000 Central Street, Suite 730 Evanston, IL, 60201
847-663-8050

Beadie FMD Fun Fact:

FMD is a chronic vascular disease that requires lifelong care focused on medical therapy as well as periodic imaging of affected arteries Info Icon

Manuscripts

Abstracts

Posters

Clinical Manifestations of Fibromuscular Dysplasia Vary by Patient Sex, presented at ACC 2013

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Factors Associated with Delay in Diagnosis of Patients with Fibromuscular Dysplasia, presented at SVM 2013

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Physical Examination Findings in Fibromuscular Dysplasia, presented at
ACC 2012

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Prevalence of Arterial Aneurysms in Patients with Fibromuscular Dysplasia, presented at ACC 2013

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Diagnostic and Follow-Up Imaging for Fibromuscular Dysplasia, presented at
ACC 2012

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Morbidity, Vascular Events and Interventional Therapy for Fibromuscular Dysplasia: A Report of the Fibromuscular Dysplasia Patient Registry, presented at ACC 2011

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Beadie Fun Fact

Whereas FMD is highly prevalent among patients with SCAD, coronary dissection is an uncommon occurrence among patients with FMD

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Other FMD Research Findings

Genomics of Fibromuscular Dysplasia

Genomics of Fibromuscular Dysplasia This study was conducted by Alexandre Persu and his team of FMD researchers out of UCL located in Brussels. Abstract: Fibromuscular Dysplasia (FMD) is “an idiopathic, segmental, non-atherosclerotic and noninflammatory disease of the musculature of arterial...

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Fibromuscular Dysplasia (FMD)

Fibromuscular Dysplasia (FMD) Marianne H Khoury, Heather L Gornik Vascular Medicine. Vol 22, Issue 3, 248 – 252. April 3, 2017 DOI: https://doi.org/10.1177/1358863X17700716 Fibromuscular dysplasia (FMD) is an uncommon vascular disease that affects the arteries of the body and is more...

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Beadie Fun Fact

The most common type of Fibromuscular Dysplasia, multifocal FMD, is an artery that has the appearance of a string of beads on imaging

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Other FMD Related Research Studies

University of Michigan

University of Michigan Santhi K. Ganesh, MD and colleagues at the University of Michigan are conducting research on the genetic basis of arterial dysplasia. If you agree to participate we will gather pertinent information from you or your medical records,...

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NACAD Registry – Primary Investigator, Dr Jackie Saw

NACAD Registry – Primary Investigator, Dr Jackie Saw The Non-Atherosclerotic Coronary Artery Disease (NACAD) Registry is an ongoing patient registry approved by the UBC research ethics board for patients with non-atherosclerotic forms of coronary artery disease. Patients with previously diagnosed...

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Mayo Clinic

Mayo Clinic The Mayo Clinic Spontaneous Coronary Artery Dissection (SCAD) Research Program is part of an innovative multidisciplinary collaborative research and clinical practice initiative formed in 2010. The goal of the program is to advance the understanding of the underlying...

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Fibromuscular Dysplasia (FMD) Registry in France

Fibromuscular Dysplasia (FMD) Registry in France We seek partnership with patient organizations. To my knowledge however, there exists no FMD patient association in Europe. This is why I am keen to have contacts with patients who could be interested in...

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