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, and you will be asked to provide a blood sample. We are also interested to know if any of your family members have been affected by FMD, and we may ask for your assistance in contacting family members who may or may not have FMD for participation in this study. Details of the study may be obtained by emailing Dr. Ganesh at:email@example.com. For more information, click here
Fibromuscular Dysplasia Biorepository 2012
In collaboration with the Cleveland Clinic and Mayo Clinic, a research study is being conducted to:
- 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;
- Investigate the prevalence of traditional cardiovascular risk factors in individuals and family members with FMD.
For anyone attending the Annual FMDSA Meeting in Cleveland, we would like to invite you to participate in this study if you have not already done so at the 2010 or 2011 conferences. 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, obtaining your vital signs, and collecting a sample of your blood.
There will be two opportunities for you to participate in this study:
- You may schedule an appointment with research personnel at the Cleveland Clinic during the week of the meeting. You do not need to be a Cleveland Clinic patient to participate in this study or to schedule an appointment with the research staff. To schedule a research appointment, please contact Neil Poria at (216)-444-0334.
- Research staff will be available during the FMDSA meeting at the conference’s designated lunch break.
If you wish to obtain more information about this study, please feel free to contact Dr. Heather Gornik at: firstname.lastname@example.org, or Neil Poria at: 216-444-0334. To view the Mayo Clinic information brochure, please click here
Update from Marja Wessels, the Netherlands
Dr Marja Wessels (MD, PhD), clinical geneticist, Dr Rob Willemsen (PhD)
and Prof J Kros (MD, PhD), pathologist at the Erasmus Medical Center
Rotterdam, The netherlands are continuing their work on histopathology
studies including immunostaining for TGFB pathway components to describe
in more detail characteristics of FMD pathology. We hope to finish these
studies by the end of this year (2011)
NIA Clinical Study
The purposes of this study are to identify the genes responsible for inherited connective tissue disorders and learn about the range of medical problems they cause. It will investigate whether specific gene changes cause specific medical problems and will establish diagnostic criteria (signs and symptoms) for the individual syndromes.
Children and adults with a known or suspected inherited connective tissue disorder (Marfan, Ehlers-Danlos or Stickler syndrome, or other closely related disorders) and their family members may be eligible for this study. Even though not stated, FMD patients are being considered/accepted for this study. For more information click here.
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