Education & Awareness - Ancillary Genetic Study
What is the purpose of this study?
People with Marfan syndrome are at a greater risk for serious heart problems than people who do not have Marfan syndrome. We want to know if there are certain genes that will help doctors know which people with Marfan syndrome will benefit most from taking certain drugs and why certain people develop specific characteristics of the disease and others do not.
What procedures are involved in this study?
If you agree to be in this study, we will take about 1 teaspoon (younger than 1 yr) or 2 teaspoons (1 year or older) of blood from a vein in your arm. The data obtained from your participation in this study, including your genetic data will be deposited into the Pharmacogenetics Research Network Database (PharmGKB). This database is a central storage area for genetic and clinical information about people who have participated in research studies. Its aim is to aid researchers in understanding how genetic variation among individuals contributes to differences in responses to drugs. There will be no cost to you for being in this study.
Is the information you store confidential?
Yes. The coordinating center at Vanderbilt University Medical Center will maintain a list of participants identified only by code number. The genetic specimens will be stored in an on-site DNA bank where the identification codes will be generated. Non-genetic information will be shared after the study is completed. De-identified DNA samples will be shared with other researchers.
Who is eligible for the clinical trial?
To participate in the trial a person must:
- • already be enrolled in the primary clinical trial (Atenolol vs. Losartan)
- • be between the ages of six months and 25 years at the time of enrollment
- • meet the diagnostic criteria for Marfan syndrome
- • not have had aortic surgery, and
- • meet other specific requirements that you or your family member will be screened for.