Emory Study of Learning and Movement
In order to participate, you will be asked to sign a consent form and 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 movement. 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.
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 and movement) may take place at Emory University or, if it is more convenient, we can come to your home.
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.
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. Men with the premutation form of the gene may be at risk for a movement disorder (tremor/ataxia syndrome). 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 your test result. If you chose to be informed of your results, it can take several months for your results to be finalized.
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 movement. In addition, if you participate in the study on learning and movement we will compensate you for your time and effort.
What is known about carriers of fragile X syndrome regarding learning and movement?
Click here to read some scientific articles regarding Fragile X, learning and movement.
If you would like to participate in our research or if you would like additional information, please contact Krista Charen at (404) 778-8479 or email@example.com.