If you are an adult, age 18-50 and have a family member with fragile X syndrome, here's more information on how you can participate in The Emory Study of Adult Learning.
What is the Emory Study of Adult Learning?
There are three primary goals of this study. To read more about the details of the study, see our Fragile X Update newsletter.
How do I participate?
In order to participate, the first step is to provide a cheek brush sample. A cheek brush is a gentle, sterile brush which you rub on the inside of the cheeks in your mouth. You may collect the sample yourself and mail it back to us. A small portion of participants will be asked to be in the follow-up study of learning and behavior. By donating a cheek brush you are not obligated to participate in the follow-up study. Some people will be asked to donate a blood sample so that we may learn more about this gene. If you are eligible to help us with the hormone study, we would need a blood sample.
Where will the study take place?
The collection of the cheek brush sample can take place at your home. We will mail you a collection kit with a postage-paid return envelope. The follow-up portion of the study (tests of learning) will take place at Emory University.
How is this study funded?
We are funded by the National Institutes of Health (NIH). Before receiving funding from the NIH, a research proposal must be evaluated by experts in the scientific community. Of the 24,000 research proposals submitted nationally, only about 20% receive funding. Projects funded by the NIH must follow strict guidelines regarding participant confidentiality and informed consent. This study will continue until the year 2004.
Will I be informed of my genetic test result from this study?
Yes. If you want to know your genetic result we will tell you. Some people we test may have a form of the gene that puts them at risk for having a child with fragile X syndrome. That form is called a premutation. Women with the premutation form of the gene may also be at risk for early menopause. These findings may cause emotional discomfort. We can reduce possible discomfort by offering resources and counseling. If you so request, we will NOT inform you of an atypical test result. That is, you have the right not to be informed of your test result.
What are the benefits of participating in this study?
We cannot promise that our study will be of direct benefit to you, but by taking part, you will help us understand how the FMR1 gene affects learning and, for women, the timing of menopause. In addition, if you participate in the study on learning and behavior we will reimburse you $100 for your time and effort. If you donate blood for the hormone study, we will reimburse you $20.
Who can I contact for additional information or to take part in the study?
You may contact Lisa Scott or Mary Leslie at (404) 727-9393. We would be glad to send you a brush kit to get started. You may also e-mail questions to fragilex@esal.org.
How can I learn more about Fragile X Syndrome?
You can call Lisa Scott or Mary Leslie at (404) 727-9393 or email at fragilex@esal.org. Our office is associated with the Fragile X Association of Georgia. If requested, we can put your name and address on the Association's mailing list so that you will be notified of upcoming informative meetings.
Other resources:
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