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Research Upcoming Research Study In collaboration with the Cleveland Clinic and Mayo Clinic, a research study is being conducted to: 1. Identify genetic factors that may influence susceptibility to certain vascular diseases like FMD so that we can find new ways to its prevention, diagnosis and treatment. 2. Investigate the prevalence of traditional cardiovascular risk factors in individuals and family members with FMD. For anyone attending the Annual Meeting in Cleveland we would like to invite you to participate in this study. Dr. Kullo, the primary investigator, from the Mayo Clinic will be speaking at the meeting and will provide an overview of the study. Any patient with FMD is welcome to participate. First-degree family members of FMD patients (such as parents, siblings, and adult children) may also volunteer to participate if they wish. If you agree to participate in this study, it will involve giving your consent, completing a medical and FMD questionnaire, and collecting your vital signs and a small sample of your blood. Research personnel from the Cleveland Clinic will be available throughout the entire meeting to conduct the study. If you wish to obtain more information about this study please feel free to contact Drs. Kullo or Gornik at: kullo.iftikhar@mayo.edu or gornikh@ccf.org. Posted: July 30, 2009 Nicole Wake, Dr. Jeffrey Olin Mount Sinai Hospital, NYC Volunteers with Fibromuscular Dysplasia, as well as healthy volunteers, are needed for a one hour research study on blood vessel function. This study will take place at The Mount Sinai Hospital in New York City, and will be conducted by Nicole Wake, under the supervision of Dr. Jeff Olin. Please click here to read a brief summary of the study. If you would like more information about the study or are interested in participating in this one hour research study, please contact Nicole Wake at 212.241.9454 or nicole.wake@mssm.edu . Nazli B. McDonnell M.D., Ph.D National Institute of Aging The National Institutes of Health is currently conducting a research study on Fibromuscular Dysplasia. The goal of this study is to further define the overlap of FMD with hereditary disorders of connective tissue. There are previous reports in the literature of an association of the Collagen 3 gene with FMD. This gene is responsible for 98% of the vascular form of Ehlers-Danlos, but likely a small percentage of FMD. It is of interest that some of the patients with Vascular EDS have a comparable appearance to FMD in the pathology specimens. We would like to focus on finding the genes that are responsible for the FMD/EDS overlap phenotype. If you are interested in participating in this study please contact Dr. McDonnell M.D. and the NIH at: http://www.grc.nia.nih.gov/studies/ctd.htm Many of you have asked about the NIH Study. The study is open and recruiting, however, there is a greater need for participants in the "mutational" arm of the study at this time as compared to the "longitudinal" arm. Blood and tissue samples as well as medical histories and records are needed to increase the power of the study. The NIH has been trying to get back to the patients/applicants as best they can for telephone consents to receive samples. As for participating in the "longitudinal" arm of the study, please be aware that there is a long wait-list, and limited resources and space in the clinical unit, therefore it will be a while before you will be contacted for participation. For those of you willing to participate by sending records and a blood sample please contact Leslie Sloper at sloperlj@mail.nih.gov