Archived | AGRE Frequently Asked Questions & The AGRE Consortium | Circa 2007 #NotAnAutisticAlly

Image background is blue with a white dna strand. In a white circle are logos for Autism Speaks, AGRE, Cure Autism Now and NIH/NIMH. Above the circle it says: Not An Autistic Ally.

AGRE Frequently Asked Questions

What is AGRE?

How do I gain access to AGRE?

How do I order biomaterials from AGRE?

How do I select biomaterials

Are AGRE samples free?

What kinds of Biomaterials does AGRE distribute?

What kind of data does AGRE collect and distribute?

Is AGRE affiliated with the NIMH?

How do I download phenotypic data?

How do I cite AGRE in a publication?

I’m lost! Who do I contact for help?

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.



How to Cite AGRE in Publications

The data gathered from AGRE families represents an unprecedented resource for the study of autism genetics. Therefore, we require that researchers using the sample acknowledge AGRE appropriately. 

To this end, we have created the following guidelines for citing AGRE. If you need further clarification, please contact the Researcher Liaison at 323-931-6577 x731. 

1) If researchers purchased AGRE biomaterials, or accessed the genotypic or phenotypic data, AGRE and Cure Autism Now should be acknowledged as follows: 

“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 Cure Autism Now and is supported, in part, by grant MH64547 from the National Institute of Mental Health to Daniel H. Geschwind (PI).”

2) If support is received from AGRE or Cure Autism Now in the form of discounted or free samples, AGRE and Cure Autism Now should be acknowledged in the following manner:

“We acknowledge support from the Autism Genetic Resource Exchange (AGRE) and Cure Autism Now. We gratefully acknowledge the resources provided by the AGRE consortium* and the participating AGRE families. The Autism Genetic Resource Exchange (AGRE) is a program of Cure Autism Now and is supported, in part, by grant MH64547 from the National Institute of Mental Health to Daniel H. Geschwind (PI).”

3) If the contribution to your research has been significant, please consider citing the AGRE Consortium* in the author line of your publication as well as in the Acknowledgements section. 

*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;
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; 
Martha Herbert, M.D., Ph.D., Harvard Medical School, Boston, MA 
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.


More With AGRE



Note/Warning:

Autistic people have fought the inclusion of ABA in therapy for us since before Autism Speaks, and other non-Autistic-led autism organizations, started lobbying legislation to get it covered by insurances and Medicaid. 

ABA is a myth originally sold to parents that it would keep their Autistic child out of an institution. Today, parents are told that with early intervention therapy their child will either be less Autistic or no longer Autistic by elementary school, and can be mainstreamed in typical education classes. ABA is very expensive to pay out of pocket. Essentially, Autism Speaks has justified the big price tag up front will offset the overall burden on resources for an Autistic’s lifetime. The recommendation for this therapy is 40 hours a week for children and toddlers.

The original study that showed the success rate of ABA to be at 50% has never been replicated. In fact, the study of ABA by United States Department of Defense was denounced as a failure. Not just once, but multiple times. Simply stated: ABA doesn’t workIn study after repeated study: ABA (conversion therapy) doesn’t work. 

What more recent studies do show: Autistics who experienced ABA therapy are at high risk to develop PTSD and other lifelong trauma-related conditions. Historically, the autism organizations promoting ABA as a cure or solution have silenced Autistic advocates’ opposition. ABA is also known as gay conversion therapy.


The ‘cure’ for Autistics not born yet is the prevention of birth. 

The ‘cure’ is a choice to terminate a pregnancy based on ‘autism risk.’ The cure is abortion. This is the same ‘cure’ society has for Down Syndrome. 

This is eugenics 2021. Instead of killing Autistics and disabled children in gas chambers or ‘mercy killings’ like in Aktion T4, it’ll happen at the doctor’s office, quietly, one Autistic baby at a time. Different approaches yes, but still eugenics and the extinction of an entire minority group of people.


Fact: You can’t cure Autistics from being Autistic.

Fact: You can’t recover an Autistic from being Autistic.

Fact: You can groom an Autistic to mask and hide their traits. Somewhat. … however, this comes at the expense of the Autistic child, promotes Autistic Burnout (this should not be confused with typical burnout, Autistic Burnout can kill Autistics), and places the Autistic child at high risk for PTSD and other lifelong trauma-related conditions.


[Note: Autism is NOT a disease, but a neurodevelopmental difference and disability.]


Fact: Vaccines Do Not Cause Autism.


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