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Q: What is AGRE?
A: The Autism Genetic Resource Exchange (AGRE) is a repository (gene bank) of genetic and clinical information that is made available to autism researchers worldwide. AGRE was created by Cure Autism Now to advance genetic research in autism spectrum disorders. AGRE collects DNA samples and clinical data from families that have two or more members diagnosed with autism or an autism spectrum disorder (known as "multiplex" families).
Q: Why does AGRE only recruit families with 2 or more affected children?
A: We focus on families where two or more children are affected with an autism spectrum disorder (ASD), because it helps us to identify the families where genes are more likely to play a crucial role. The more people in a family with an ASD, the greater the likelihood that genes are involved.
Q: Who is on the AGRE Team?
A: The AGRE team is made up of clinicians, researchers, psychologists, medical doctors, and other staff that coordinate all aspects of family participation, including scheduling family visits, conducting clinical and medical assessments, processing biomaterials and clinical data, and responding to family requests. AGRE is located in the Autism Speaks office in Los Angeles, California.
Q: What does my participation involve?
A: The AGRE project requires families to complete a series of activity steps involving diagnostic assessments, medical evaluations, and a family blood draw. Family home visits generally take place on three separate occasions: (1) Diagnostic evaluations will be performed with one parent and each affected child over the course of a day; (2) All family members will participate in the blood draw, which will last approximately 1-2 hours; and (3) A pediatric neurologist (or developmental pediatrician) will perform medical examinations of the children and will conduct a medical history interview with one parent (approximately 4 hours). The duration of each visit will vary from family to family.
Q: Where are the assessments and blood draws performed?
A: What makes the AGRE program unique is that all of the study steps are performed in the family home. AGRE will organize trips to various parts of the country and schedule several families in a particular area during each trip. A separate trip will be arranged for each of the three study steps, which means that families may wait up to a year or more to complete the study.
Q: Who is paying for this?
A: Autism Speaks and the National Institute of Mental Health (NIMH) (
http://www.nimh.nih.gov
) both provide funding for AGRE. There is no cost to your family to participate.
Q: Will our family's information be kept confidential?
A: Yes. All data and blood collected by AGRE are kept strictly confidential and coded with a confidential ID number to protect your family's identity. No family contact information will be shared with anyone outside of AGRE without your permission.
Q: Should I get childcare when AGRE is visiting my home?
A: Staff visits to the family home tend to be lengthy, involving interviews with the parent and testing of the affected children. It is often helpful to have extra help so that you and your children can participate fully in the assessments. AGRE will gladly reimburse you for your childcare expenses up to $75.00 a day.
Q: What clinical information can my family expect from AGRE?
A: After a family has completed the clinical assessments and had their blood drawn, AGRE will provide a feedback letter summarizing the results of the affected children's diagnostic evaluations.
Q: What blood test results can my family expect from AGRE?
A: Once your family's blood samples are processed, samples from one affected child are sent to an outside laboratory for Fragile X testing and karyotyping (chromosomal analysis). Although AGRE does not routinely release the results of lab tests to families, you may request to be informed of any "positive" lab results (i.e., evidence of Fragile X syndrome or a chromosomal abnormality). AGRE staff are not allowed to discuss the results of these medical tests with you directly, but will arrange for your family physician or genetic counselor to convey these results to you.
Q: Is AGRE actually doing genetic research?
A: No. AGRE is an open resource - a repository that provides DNA samples and clinical data from multiplex families to qualified researchers.
Q: Who will use the AGRE resource and for what purpose?
A: Any qualified researcher whose focus is autism research is eligible to utilize the AGRE resource. The AGRE Researcher Review Committee must approve all researcher applications.
Q: Who provides scientific oversight of the project?
A: AGRE has a Scientific Advisory Board composed of experts in genetics and neurological disorders that provides scientific direction for AGRE. The AGRE research program has been approved by an outside Institutional Review Board to ensure the protection of all research participants.
Q: How are DNA samples made available to qualified researchers?
A: The process of immortalizing cell lines - a laboratory technique that allows white blood cells to reproduce indefinitely - provides an unlimited supply of cell lines and DNA to researchers. Once immortalized, the samples are stored and ready for distribution.
Q: Where will the DNA samples be stored?
A: AGRE ships blood samples in a customized kit to the Rutgers University Cell and DNA Repository (
http://www.rucdr.org
) in New Jersey. It takes approximately three to four months for the cell lines to be immortalized and prepared for distribution.
Q: Can I participate in AGRE if my family is already in another genetic study?
A: AGRE does not recruit families who participate in other collaborative genetic studies. Researchers frequently combine data sets from various sources in order to identify the genes most likely associated with autism. Because the identities of AGRE families are kept confidential, researchers will not know when a family is duplicated in the combined data set. As a result, families participating in more than one study could invalidate the results of their research. It is therefore important to let AGRE staff know if your family has participated in another genetic study.
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