Participation in the Genetics of Autism Spectrum Disorders Study
- We are recruiting two types of families:
- Simplex families (ones in which one individual has autism)
- Multiplex families (one in which two or more family members have autism)
- Individuals with autism and both of their parents must be able to participate.
- Individuals with autism must be between the ages of 4 years and 21 years.
- For both simplex and multiplex families, other family members may be asked to participate.
If I participate, what does my family have to do?
- Complete a family history interview conducted over the telephone.
- Complete several psychological tests, in person or over the telephone, including the Vineland Adaptive Behavior Scales, the Autism Diagnostic Interview-Revised (ADI-R), and the Autism Diagnostic Observation Schedule (ADOS).
- Donate blood samples.
There is no cost to participate in this study, and travel to Vanderbilt University Medical Center is not required.
Will my family receive results of the study?
We can provide results of psychological testing to participants wishing to receive them. Since these genetic evaluations are currently exploratory and are not validated for clinical decision-making, we are not able to share specific genetic research results from this study with participants. We do let participants know about the overall progress of our research through a yearly newsletter and updates on our Web site.
How will my privacy be protected?
There are many safeguards in place to prevent the release of information from this study. All samples obtained for this study will be assigned a code. A key to the code will be maintained in a password-protected computer database. Only the study investigators and the study coordinators will have access to this code and to any information that identifies an individual as a participant in this study. Research data will be kept in research charts in a locked file room/cabinet or will be entered into a password-protected database.
How can I participate?
For more information, or if you would like to participate in our study, please contact our project manager:
Kelly Taylor, MS, CGC
Center for Human Genetics Research
Vanderbilt University Medical Center
1207 17th Ave South Suite 100
Nashville, TN 37212-2838
615-322-7195
1-888-717-4319 (toll-free)
ktaylor@chgr.mc.vanderbilt.edu