Educating physicians and health care providers about FMD is a primary goal of the FMDSA. Please also review the Research Network Section for up to date data being published from the FMD Patient Registry.
International Fibromuscular Dysplasia Network Symposium May 15th and 16th, 2014 in Cleveland Ohio. Co-chaired by Dr Heather Gornik and Dr Jeffrey Olin
This meeting will gather key researchers and clinical thought leaders in the field of FMD for a state-of-the-art review of the existing knowledge base and current research activities related to FMD in the United States and abroad. A large proportion of the meeting will be focused on the creation of an FMD research network, comprised of four focused working groups on various aspects of FMD research (epidemiology, genetics, research registries, and imaging and clinical therapeutics).
The goal of this meeting is to establish a multi-disciplinary collaborative FMD research network and set an agenda of research priorities with subsequent funding and execution plans to significantly advance knowledge of the understanding of FMD while improving evidence-based care for FMD patients. Small group interaction among working group members with specialized expertise in FMD clinical care and/or the specific research disciplines will discuss research priorities and propose a roadmap of research initiatives moving forward. The genetics working group will meet to determine best use of existing biorepositories of stored blood samples. There will be substantial effort to publicize the discussions of the conference and maximize future research collaborations.
The proposed audience for this conference includes vascular specialists and other clinicians who care for patients with FMD (e.g., neurologists, nephrologists). For more information on the meeting details please click here.
March, 2013 NEW DATA FROM THE FMD REGISTRY RELEASED AT THE ACC:
While FMD more commonly affects women, there are important sex–related differences in the clinical manifestations. Men with FMD have higher rates of arterial dissection and aneurysm and prevalence of renal artery involvement. Cerebrovascular signs and symptoms are more common in women. To view the abstract, click here
MORE NEW DATA FROM THE FMDSA FUNDED REGISTRY:
Roughly 1 in 5 FMD patients reported an aneurysm. Male FMD patients were more likely to develop an aneurysm than female FMD patients. FMD patients with aneurysms had earlier onset of hypertension, higher prevalence of subarachnoid hemorrhage, and were more likely to have FMD identified in multiple vascular beds, especially mesenteric and intracranial carotid artery involvement. Further research is needed to determine the cause of arterial aneurysms in FMD and more effectively recognize FMD patients at risk for aneurysm formation. To view the abstract, click here
Data Released in Circulation May, 2012 on the first 447 patients in the United States FMD patient Registry, click here
Paris update, by Dr PF Plouin. The fifth HEGP (Hopital Europeen G Pompidou) meeting on FMD was held on October 21st. This annual meeting brings together physicians from Bordeaux, Caen , Clermont-Ferrand , Grenoble , Lille , Saint-Etienne , Marseille, Nancy and Toulouse participating in a national network on FMD.
The French network in coordinated in Paris by PF Plouin (Hypertension Unit, HEGP), E Mousseaux (Department of Radiology, HEGP), and E Touzé ( Stroke Center , Hopital Saint-Anne, Paris). A registry designed to document phenotypic and genetic traits in patients with renal and/or cervical artery FMD is used for a national cohort study evaluating the progression of FMD lesions and for pathophysiological and genetic studies.
J Olin and P Mace (USA), as well as P De Leeuw (The Netherlands), A Morganti ( Italy ), and A Persu ( Belgium ) were invited to participate in this year’s meeting in order to exchange information and data and to consider harmonizing the US and the French registries. This would be a first step for organizing cooperative or complementary studies in this rare condition.
For the most recent data from the FMD Patient Registry presented at the 2012 ACC in Chicago, abstracts are posted on the JACC web site, please click here
Variable Clinical Spectrum of Fibromuscular Dysplasia of the Brachial ArteriesAna Casanegra.
MD1, Vikram Kashyap, MD2, Sandra Yesenko, BA, RVT1, Carmela Tan, MD3, Heather L. Gornik, MD, MHS1 - Cleveland Clinic 2010
Novel Mutation in the Transforming Growth Factor Beta Receptor-1 Gene in a Patient with Cerebrovascular Fibromuscular Dysplasia.
Adeeb Al-Quthami MD¹, Christina Rigelsky MS², Rocio Moran MD², Heather L. Gornik MD MHS¹ - Cleveland Clinic 2010
Endovascular management of spontaneous carotid artery dissection.
Randall C. Edgell, MD, Alex Abou-Chebl, MD, Jay S. Yadav, MD Cleveland, Ohio
Recognizing and managing fibromuscular dysplasia, by Jeffrey W. Olin, D.O.
Medical Grand Rounds, take home lectures by Cleveland Clinic and visiting faculty
Fibromuscular Dysplasia PowerPoint Presentation for Medical Professionals. PowerPoint developed by FMDSA Medical Advisory Board in July 2005.
Fibromuscular Dysplasia, by David P. Slovut, M.D. and Jeffrey W. Olin, D.O. This article was published in the New England Journal of Medicine (Volume 350:1862-1871 - April, 29 2004).
eMedicine Web Article on Fibromuscular Dysplasia. Article published by James Wilson, MD and Richard Hughes, MD on October 6, 2005.
Fibromuscular Dysplasia, by Susan M. Begelman, MD. and Jeffrey W. Olin, D.O.The article was published in Current Opinion in Rheumatology, 2000
Spontaneous Dissection of Carotid & Vertebral Arteries, by Wouter I. Schievink, M.D.Published in The New England Journal of Medicine on March 22, 2001
Listen to Dr. Olin's interview about FMD from the series "Heart Matters" on ReachMD, the channel for medical professionals.
Orphanet is led by a European consortium of around 40 countries, coordinated by the French team. National teams are responsible for the collection of information on specialised clinics, medical laboratories, ongoing research and patient organisations in their country. For information on research, clinical trials and resources in other countries, please click here
Please note: for patients reading this information - the information provided in this link is designed to support, not replace, the relationship that exists between you and your physician.