AGRE Frequently Asked Questions

Autism Speaks AGRE

Frequently Asked Questions

 

Q: What is AGRE?
A: The Autism Genetic Resource Exchange (AGRE) is a program of Autism Speaks dedicated to advancing 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: Submit an AGRE Researcher Application. See instructions and links here.

Q: How do I order biomaterials from AGRE?
A: After your application has been approved and you have been given a 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. Fill out the form, save a copy in .xls or .xlsx format, and email it to asgenetics@autismspeaks.orgalong with an approved purchase order for the samples. Please contact our AS Genetics team, for pricing information. 

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 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 competitive with other gene banks. For pricing information, please contact the AS Genetics team.

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 AS Genetics teamfor 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). AGRE also collected a set of cognitive exams including the Raven Progressive Matrices, the Vineland and the PPVT. Families were given an opportunity to provide information on medical and environmental exposure histories on the parents, affected, and unaffected children via our Online System for Clinical Research (OSCR).

Not every family will have all of these elements collected. 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. 

Q: Can I recruit AGRE subjects for my study?
A: Yes. AGRE is often approached by outside organizations and research groups to collaborate on new and exciting research being done in the field. These projects range from passive recruitment of registered families for a study (sending flyers/emails) to active data collection. The families participating in the AGRE program are considered a precious resource and every effort is made to ensure that they are not overburdened. In order to accomplish this, AGRE developed a protocol for selecting and structuring collaborations that includes project vetting based on scientific merit, family burden, logistical feasibility, etc. 

For further information concerning a possible collaboration, please contact the AS Genetics team. 

 

Q:Does AGRE offer any services related to the National Database for Autism Research (NDAR)?
A: Yes. Researchers can use ISAAC to federate their data, meaning that NDAR can access the data to make it available through their portal. All data shared with NDAR resides on the ISAAC system, allowing you to access and modify your data as needed. Contributing to NDAR allows researchers to conduct meta analyses across studies using de-identified global unique identifiers (GUIDs) as well as satisfy your government grant deliverables.

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.”

Q:Who do I contact for help?
A: Please contact the AS Genetics team for assistance or with any additional questions.