Atenolol vs. Losartan Clinical Trial
A clinical trial to compare the effects of the drugs atenolol and losartan on people with Marfan syndrome began in 2007. The clinical trial is based on research that showed a drug known as losartan prevented aortic dilation (when the aorta grows too large) and other Marfan features in mice that have Marfan syndrome. The trial is funded by the National Heart Lung and Blood Institute (NHLBI) of the National Institutes of Health (NIH), and conducted by the Pediatric Heart Network (PHN). The National Marfan Foundation (NMF) is also helping to support the trial. Click here for more information. The coordinator at the enrollment site will talk to you about the trial, answer your questions and help decide if you are eligible to be in the trial. For more information...
GenTAC- National Registry of Genetically Triggered Thoracic Aortic Aneurysms and Cardiovascular Conditions
This registry will collect clinical data and samples on patients with aneurysms and dissections that are caused by genetic alterations. The registry is looking to enroll patients with the following syndromes: - Marfan syndrome
- Bicuspid Aortic Valve
- Loeys-Dietz syndrome
- Familial thoracic aortic aneurysms and dissections
- Turner syndrome
- Vascular Ehlers Danlos syndrome
- Familial bicuspid aortic valve
- Aneurysms/dissections < 50 years of age
- Other less common conditions qualify; please call to find out if you’re eligible.
In order to participate in the GenTAC registry, enrollment must be made through one of the official enrolling centers. However, a physical trip to the center is not required. Each individual will be required to sign a consent form for research and must agree to have their medical records reviewed. Patients will be asked to fill out a questionnaire and submit a blood or saliva sample. We would also request a tissue sample if you have surgery. All information will be coded with a number to protect your identity. If you are interested in participating, please contact one of the five centers listed below or the Data Coordinating Center (RTI) at 1-800-334-8571 ext 24640. For further information, go to the official website, http://gentac.rti.org/ Johns Hopkins University
Contact: Kira Lurman
Phone: 410-502-2350
E-mail : kmarant1@jhmi.edu Weill Cornell Medical College
Contact: Deborah A. McDermott, MS, CGC
Phone: 212-746-2054
E-mail: dam2001@med.cornell.edu University of Pennsylvania
Contact: Tamera Means
Phone: 215-614-0294
e-mail: Tamera.Means@uphs.upenn.edu Oregon Health & Science University
Contact: Jessica D. Kushner, MS, CGC
Phone: 503-346-0023
E-mail: kushnerj@ohsu.edu University of Texas at Houston and Baylor College of Medicine
Contact: Claire Noll
Phone: 713-500-7072
E-mail: Claire.Noll@uth.tmc.edu
Aortic Valve Operative Outcomes in Marfan Patients: A Multi-Center Study
Two types of aortic valve operations are offered to patients who need to restore the proper function of their aortic valve: aortic valve sparing and aortic valve replacement. Valve sparing opposed to “classic” valve replacement with mechanical valve does not require a life-long commitment to blood thinning therapy. Which operation works better for individuals with Marfan syndrome? Baylor College of Medicine and the National Marfan Foundation are sponsoring a multi-center study to compare the long-term durability of aortic valve sparing and replacement procedures. Leading surgical centers specializing in aortic root surgery in the United States and worldwide will join their efforts to conduct this three-year study.
Enrollment to the study is now open. Individuals who plan for aortic valve and root surgery are welcome to contact the study personnel about participation: Irina Volguina, Ph.D.
Project Manager
Baylor College of Medicine
832-355-9943 (Voice)
832-355-9944 (Fax)
volguina@bcm.edu You are invited to get more information by visiting the study web site at http://www.bcm.edu/study/marfan/
Natural History of Connective Tissue Disorders Study at the NIH
Nazli McDonnell, MD, PhD, and colleagues at the National Institute of Aging at NIH are currently exploring the natural history of Marfan syndrome, Ehlers-Danlos, Stickler Syndrome, Fibromuscular Dysplasia other connective tissue disorders. Details of the study as well as sample consent forms and questionnaires to be completed for eligibility can be found at the following website: http://www.grc.nia.nih.gov/studies/ctd.htm
Improving Aortic Health in Adults with Marfan Syndrome: Losartan vs. Atenolol
The purpose of this trial is to compare the effects of the medications losartan and atenolol on the stiffness of the heart and aorta of adults with Marfan Syndrome. The trial is for adults who have never had an aortic dissection or aortic/cardiac surgery. The aortic wall is often stiff in adults with Marfan syndrome, even if aortic size is relatively normal. We are investigating Losartan's ability to correct this stiffness, and improve aortic health. The trial involves a non-invasive ultrasound of the heart and the aorta before and after 6 months of treatment with losartan or atenolol. The trial is being run out of Brigham and Women's Hospital and Children's Hospital in Boston. For more information, please contact: Dr. Ami B. Bhatt
Vascular Research Center
Brigham and Women's Hospital
Phone #: 617-732-6320
Marfan Eye Study
Dr. Dietz and his colleagues at Johns Hopkins University are investigating the eye problems that individuals with Marfan syndrome have, and whether any currently available medications help with these problems. They are interested in hearing from individuals who do not have significant eye problems, as well as those who do. This will also help them get a better understanding of the types and frequencies of eye problems that individuals have. They are looking for information on individuals in all age groups. The study requires filling out a short questionnaire about your medical diagnosis, eye history, medications, and past/current eye physicians. The questionnaire should take about 10-20 minutes of your time, depending on personal history. A consent form and medical release form will also be included. Records will be obtained from your past/current eye physicians, so if you do not know exact details of your eye history, this will not be a problem.
If you are interested in participating, please email the team at MarfanEyeStudy@jhmi.edu and they will send you a copy of the questionnaire, consent form, and medical release form to sign. Please also feel free to ask them any questions you have in your email.
Please note that patients who are currently enrolled in the losartan-atenolol clinical trial are not eligible for this study, because their medication type is unknown.
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