Participation in the Autism Genetic Resource Exchange (AGRE)
The Autism Genetic Resource Exchange (AGRE) is an autism research program. Our primary mission is to collect information and blood from families with two or more children affected with an autism spectrum disorder and to make this data available to autism researchers throughout the world, as quickly as possible. Because we want to make your participation as easy as possible, most, if not all, of the data will be collected in your home at a convenient time for you and your family.
The AGRE research program involves various steps. One of the first steps is an in-home visit from a phlebotomist – someone who is certified to draw blood. Our phlebotomists are specially trained to work with children, particularly those with special needs.
A second in-home visit will be scheduled with one of our psychometricians – someone who is certified to administer diagnostic assessments for children with autism spectrum disorders. During this process interviews are conducted and there is some testing directly with your affected children. Most of these activities involve social interaction, games, puzzles, questions, and other things that are generally pretty enjoyable for the children.
After the psychometrician has been to your home, a telephone consultation with one of our pediatric neurologists will be scheduled. The doctor will interview you about every family member’s medical history. This will be done after you have completed the medical history questionnaires about each family member.
There is no cost for you to participate in the AGRE program. As mentioned earlier, each step of the process is conducted in the comfort of your own home. And, your personal information is kept very confidential. Researchers will know you by a coded number; only the AGRE staff will have your personal information.
With your family’s participation, researchers will be able to have more information to help them find the causes of autism. The more families that participate in the AGRE program, the sooner researchers can discover the causes. That’s why your family is so important to us and the entire autistic community.
To find out more about this valuable program and to determine if your family qualifies, please contact Lynne Herod-DeVerges at the toll free number 866-612-2473 ext. 788 or send an e-mail to lheroddeverges@agre.org. You may also want to visit our website at www.familyagre.org.
Our team will be in your area around mid-April 2008 so now is the best time to get involved.
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