Q: What is AGRE?
A: The Autism Genetic Resource Exchange (AGRE) is a program of Autism Speaks to advance genetic research in autism spectrum disorders. Genetic biomaterials and clinical data are obtained from families that have more than one family member diagnosed with an Autism Spectrum Disorder. The biological samples, along with the accompanying clinical data, are made available to AGRE-approved researchers.

Q: How do I gain access to AGRE?
A: There are three critical steps required to gain access to the AGRE database:

1) Complete the online AGRE Access Application.
2) Print, complete, and sign the AGRE Researcher Distribution Agreement.
3) Mail or FAX the AGRE Researcher Distribution Agreement along with a copy of the Principal Investigator's IRB approval or exemption to AGRE at the address or FAX number below.

Vlad Kustanovich, Ph.D.
Researcher Liaison
Autism Genetic Resource Exchange
Autism Speaks
5455 Wilshire Blvd., Suite 2250,
Los Angeles, CA 90036-4234
FAX: 323-931-1977

Once your application has been received at our office, the AGRE researcher review committee will review your application. All applications are reviewed no more than 2 weeks from the date submitted. If your application is approved, you will receive a letter welcoming you to AGRE and providing you with a username and password. This will allow you to access the data posted on the AGRE website immediately.

Q: How do I order biomaterials from AGRE?
A: After your application has been approved and you have been granted your username and password, you may download a pedigree catalog file (in Excel format) containing a listing of families, their relationships and their sample identification numbers.

Please download the AGRE Biomaterials Online Order Form from the AGRE website. Then fill out the Form according to the instructions given within, save a copy to your computer and email it to the AGRE Researcher Liaison. Please call the Researcher Liaison for pricing information (based on Academic or Commercial Pricing). Please FAX an approved purchase order for the samples.

Q: How do I select biomaterials?
A: It is important to look through the data and make sure that all the data that you are interested in can be found in the pedigrees of interest. AGRE collects phenotypic data in a tier-wise fashion, based on the availability of the family to be scheduled for an appointment. While AGRE will only distribute pedigrees with validated ADI-R diagnoses, sample distribution may precede collection of other data.

AGRE has created a Flags list which identifies families in the collection with atypical characteristics that may make them questionable for certain genetic studies (ex. Families with a known Fragile X mutation). Therefore, it is important to identify selection criteria before purchasing biomaterials.

Q: Are AGRE samples free?
A: No. Sample acquisition, processing, and distribution are expensive processes, and we pass on a fraction of these costs to researchers. AGRE charges researchers a per sample fee for the acquisition of samples. Our prices are very competitive with other gene banks. For pricing information, please contact the Researcher Liaison.

Q: What kinds of Biomaterials does AGRE distribute?
A: AGRE distributes DNA, Cell line and Serum samples. Please note that serum samples are NOT available for every family in the AGRE repository. Please contact the Researcher Liaison for sample availability.

Q: What kind of data does AGRE collect and distribute?
A: AGRE collects the Autism Diagnostic Interview – Revised (ADI-R) on each of the reported affected individuals. In addition, affected individuals are assessed with the Autism Diagnostic Observational Scales (ADOS). Over time, we aim to collect a set of cognitive exams including the Raven Progressive Matrices, the Vineland and the PPVT. Many families are also scheduled for physician visits during which time we collect medical histories on the parents, affected, and unaffected children. In addition, Physical and Neurological Exam data is also collected during the physician visit.

While AGRE aims to eventually collect all data for all subjects in the study, pedigrees are distributed before the entire process of data collection has been completed. Therefore, it is important to choose pedigrees for your study based on the specific criteria of your study as well as the availability of the necessary data.

Q: Is AGRE affiliated with the NIMH?
A: Yes. AGRE is serving as a collection site for the NIMH Genetics Initiative. All samples collected by AGRE are placed in the NIMH repository. Samples contributed by AGRE can be found by referencing Site numbers 72 and 74.

Q: How do I download phenotypic data?
A: We have a step-by-step instructional guide on our website to walk researchers through the process that can be accessed by clicking here.

Q: How do I cite AGRE in a poster, presentation or publication?
A: A detailed description of citation instructions can be found here.  In general, the following statement should be placed in the acknowledgements section:

“We gratefully acknowledge the resources provided by the Autism Genetic Resource Exchange (AGRE) Consortium* and the participating AGRE families. The Autism Genetic Resource Exchange is a program of Autism Speaks and is supported, in part, by grant 1U24MH081810 from the National Institute of Mental Health to Clara M. Lajonchere (PI).”

Q: I’m lost! Who do I contact for help?
A: Please contact the Researcher Liaison toll free at 323-297-4731 for assistance.

*The AGRE Consortium:

Dan Geschwind, M.D., Ph.D., UCLA, Los Angeles, CA;
Maja Bucan, Ph.D., University of Pennsylvania, Philadelphia, PA;
W.Ted Brown, M.D., Ph.D., F.A.C.M.G., N.Y.S. Institute for Basic Research in Developmental Disabilities, Staten Island, NY;
Joseph Buxbaum, Ph.D., Mt. Sinai School of Medicine, NY, NY;
Rita M. Cantor, Ph.D., UCLA School of Medicine, Los Angeles, CA;
John N. Constantino, M.D., Washington University School of Medicine, St. Louis, MO;
T.Conrad Gilliam, Ph.D., University of Chicago, Chicago, IL;
Clara Lajonchere, Ph.D, Cure Autism Now, Los Angeles, CA;
David H. Ledbetter, Ph.D., Emory University, Atlanta, GA;
Christa Lese-Martin, Ph.D., Emory University, Atlanta, GA;
Janet Miller, J.D., Ph.D., Cure Autism Now, Los Angeles, CA;
Stanley F. Nelson, M.D., UCLA School of Medicine, Los Angeles, CA;
Gerard D. Schellenberg, Ph.D., University of Washington, Seattle, WA;
Carol A. Samango-Sprouse, Ed.D., George Washington University, Washington, D.C.;
Sarah Spence, M.D., Ph.D., UCLA, Los Angeles, CA;
Matthew State, M.D., Ph.D., Yale University , New Haven, CT.
Rudolph E. Tanzi, Ph.D., Massachusetts General Hospital, Boston, MA.