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 a European FMD initiative and would eventually attend our forthcoming FMD meeting (November 8th in Paris).
Written by Pr. Pierre-François Plouin, June 2013
ARCADIA (Assessment of Renal and Cervical Artery DysplasIA) is a French registry designed to document phenotypic and genetic traits in patients with renal and/or cervical artery fibromuscular dysplasia (FMD). PROFILE (PROgression of FIbromuscular LEsions) is a cohort study evaluating the progression of FMD lesions. These studies are coordinated by the hypertension unit and the reference center for rare vascular diseases at Hopital Europeen G Pompidou, Paris, France (http://www.maladiesvasculairesrares.com).
The main objective is to create a National FMD registry to collect standardized information from consenting patients diagnosed with the condition in 16 participating centers. The first application is the assessment of the frequency of multi-site FMD, i.e. the frequency of cervical artery FMD in patients presenting with renal artery FMD and vice-versa (ARCADIA and PROFILE). The second application is the assessment of the incidence and risk factors for progression of FMD lesions (PROFILE). The third application is case-control study to identify susceptibility genes for FMD, including genes that may influence disease progression or be associated with complications.
Patients are eligible if (a) they have renal or cervical artery FMD with either the string-of-beads sign (‘medial’ or multifocal FMD) or focal/tubular lesions (focal FMD) at CT-angiography, MR-angiography, or intra-arterial angiography; (b) they give informed consent to provide leukocyte DNA for analysis and for the collection of pertinent bioclinical and morphologic annotations. In addition to DNA sampling and collection of cross-sectional information, patients who are available and willing to undergo a 3-year follow-up are offered the possibility to enroll in the PROFILE cohort. Phenotypic assessment, follow-up and indications for revascularization comply with current recommendations and best clinical practice. Patient participation lasts one day for ARCADIA, and 3 years for PROFILE.
The natural history of the condition will be better characterized, allowing development of optimal strategies for investigating, monitoring, following-up and treating patients with FMD. The biological and genetic study should help improve understanding of the pathophysiology and genetic determinism of this rare disease and open new possibilities for therapy.
University of Kansas Fibromuscular Dysplasia Center
Physicians and staff who have a dedicated interest and expertise in the management of FMD staff the KU FMD clinic. This clinic is led by Kamal Gupta, MD who is a vascular medicine specialist with board certification in Vascular Medicine and Interventional Cardiology. The clinic has close affiliations with specialists in kidney disease, neurology, vascular surgery and others so that our patients with FMD can be seen by different specialists as needed. The KU complex hypertension center is also housed in the same area as the FMD Clinic and led by Kamal Gupta, MD and Sri Yarlagadda, MD (Kidney Disease specialist). Since many FMD patients also have difficultly controlling their hypertension, this facility is of significant benefit to our patients.
At the KU FMD clinic we understand that though FMD can be managed successfully, many patients need long-term monitoring and guidance. As the only dedicated FMD center in the region we are fortunate to look after patients referred from a multi-state area. We understand that patients travel long distances at considerable inconvenience to see us and thus we do all we can to make the visit most useful and time efficient. Prior to your visit our FMD nursing staff will call and get detailed information about your history and any tests that may have been done so that we can have them for review prior to your visit and also schedule the tests that you may need so that all may be done preferably the same day. Our dedicated staff strives to meet the needs and expectations of our patients.
For more information or to schedule an appointment please visit us at: http://www.kumed.com/heart-care/diseases-and-treatments/vascular-disease/fibromuscular-dysplasia or to schedule an appointment please call 913 588 9700.
March, 2013 NEW DATA FROM THE REGISTRY RELEASED TODAY 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 poster, click here. Presenting the posters are Dr Esther Kim, Dr Heather Gornik and Jordan Gavin.
FMDSA has earned the GuideStar Exchange Seal, demonstrating its commitment to transparency.
Patients United 2013
It is that time of year again when we are looking forward to our spring fundraiser "Patients United"
To date we have had 10 States participate in this event. Our hope is to one day have all 50 States Participate! The event is held during the months of March, April and May.
Individuals can have an event or groups can work on one together. Events have been large in size
or small. What ever the member/members decide. Some past events have been
Wine Tasting Party
Napa Cottage Stay
Jeans Day at Work
Raffle a FMDSA Bracelet
First Giving Fundraising Page
As you can see there are lots of ways to fundraise. There are also many great fundraising ideas to be found on the internet. Small or big every dollar raised for FMDSA helps us to continue to support the FMD Registry funded soley by FMDSA.
If you are a group leader or member of a FMDSA support group perhaps your group might want to jointly work on a fundraiser. Or if you are an individual member and have not yet met others with FMD this might be a great way to reach out to someone and work on a fundraiser together.
Should you like to participate in Patients United or have any questions please contact Maureen Womack at firstname.lastname@example.org. Let's make this the most successful Fundraising year yet!
FMDSA is an Official Charity of the 2014 Cleveland Marathon
To be held the same weekend as the FMDSA Annual Meeting. We are putting together teams of runners and walkers to participate in the marathon, half marathon, 10K, 5K and kids run. FMDSA is also looking for 25 volunteers to work at a water station on Sunday May 18th, the day after after the annual meeting. All 25 people will stay together and we can be as creative as we would like with our water station. For more information please contact volunteer Karen Prcela at email@example.com, For specific information on the race, click here.
For runners when you register here are the discount codes. FMDSA's 2014 charity code is "FDS4FULL" for the marathon, "FDS4HALF" for the half; and "FDS4TRACK" for the 10k and 5k. This code should be entered into the COUPON CODE section of the application form.
We would like to encourage our runners to create a firstgiving fundraising page, it's fast, easy and secure. Create your page, click here.
Rare Disease Day, February 28th, 2013
Every year, Rare Disease Day has a specific theme worldwide. Although people with rare disorders face different medical obstacles, rare disease patients all over the world face the same type of medical, social and economic challenges related to their disorders. Together, in solidarity, the international rare disease community can build a better world for rare disease patients. Visit the Rare Disease Day website to learn more,and see how you can get involved click here.
2012: For the most recent data from the FMDSA funded Patient Registry, abstracts are posted here
FMD Medical Information In the News. This has started out to be a great year and for all of you that have participated in the registry and donated to FMDSA to support the Patient Registry the impact we are having is obvious!
- Fibromuscular Dysplasia Registry Results presented at the ISET Meeting in Miami by Dr Jeffrey Olin. click here
- FMD makes the Cover of Endovascular Today. Thank you Dr Olin and colleagues! click here
- Images and Case Reports. Thank you Dr. Gornik and Colleagues! click here
Dr. Jackie Saw on Coronary Dissection and FMD. click here
Hear Dr Saw discussing the data. She is introduced about a minute into the Pod Cast. click here
The National Stroke Association features Stacey, an FMD patient with a very inspiring story
TV Show "House"
The TV show did a segment in late February and fibromuscular dysplasia was mentioned as a possible diagnosis. One of the writes for the show is Lisa Sanders who also writes for the New York Times. Recently Lisa also featured an fmd patients story in the New York Times. click here
TV station, NBC-40 (South Jersey)...our own Cheryl Bailey spreads awareness on Health Update
To watch the full interview, click here, select FMDSA TV Interview on left under Links.
Vascular Disease Foundation, Winter 2012 magazine
The magazine published an article with Dr. Heather Gornik and our own Cheryl Bailey
Click here to read the article.