The Fibromuscular Dysplasia Society of America (FMDSA) Welcomes The First International Center to Participate in the Registry

The Fibromuscular Dysplasia Society of America (FMDSA) is excited to announce the North American Registry for Fibromuscular Dysplasia (FMD), formally known as the United States Registry for Fibromuscular Dysplasia. The name change comes as the result of The Ottawa Hospital in Ontario, Canada, becoming a participating registry center.

“We are really excited to be one of the sites for the FMD registry,” commented Dr. Swapnil Hiremath, the center’s principal investigator. “We need to build up excellence in care for FMD, which we hope will be possible as we learn more about it with the help of the data collected and knowledge generated with the registry.” Dr. Hiremath is a Staff Nephrologist at The Ottawa Hospital, Associate Professor in the Faculty of Medicine at the University of Ottawa, and Associate Scientist in the Clinical Epidemiology Program at The Ottawa Hospital Research Institute, specializing in hypertension. Dr. Hiremath first became interested in joining the registry after one of his patients with hypertension presented with stroke—they were subsequently found to have FMD.

In 2007, the Fibromuscular Dysplasia Society of America recognized the need for 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. Today, there are 20 participating centers, and over 4,100 patients have participated in the registry.

“We are excited about the addition of The Ottawa Hospital in Ontario, Canada. The Ottawa Hospital is the first international site to join our registry and for this reason, the name was changed to reflect our expansion into Canada,” stated Pam Mace, FMDSA Executive Director, and FMD patient. “Outside of the United States, the majority of patients contacting us are from Canada. We hope with the addition of this center we can support and meet the needs of Canadians living with FMD”

The disease primarily affects women, although men and children can also be affected. FMD causes arteries to have abnormal cell development in the artery wall and can lead to narrowing, aneurysms, dissections, stroke, and heart attacks. The two most common symptoms of the disease are headache and high blood pressure.

There is no known cause or cure for the disease, but with proper diagnosis and treatment, patients can lead healthy, productive lives. The data gathered from the patient registry is changing the way the medical field approaches diagnosing and treating FMD, resulting in better patient outcomes.

About Fibromuscular Dysplasia Society of America (FMDSA)

The Fibromuscular Dysplasia Society of America (FMDSA) is a not-for-profit patient advocacy organization working towards better diagnosis and treatment of Fibromuscular Dysplasia (FMD). We do this by building awareness of FMD, funding research activities, providing support, and educating patients and the healthcare community. FMDSA works to inspire and facilitate collaboration between national and international organizations devoted to FMD and FMD-related research, education, and patient care.