The Autism Genetic Resource Exchange (AGRE) is a non-profit DNA repository and family registry housing a database of genotypic and phenotypic information that is available to autism researchers worldwide. AGRE is an unprecedented resource for the study of autism genetics.
One of the world’s largest shared resources for the study of autism and related disorders, AGRE houses a collection of over 1700 well-characterized multiplex and simplex families made available to the greater scientific community. Founded by Cure Autism Now (CAN) in 1997, AGRE is currently funded by the National Institute of Mental Health (NIMH) and Autism Speaks, which merged with CAN in 2006. Thanks to Autism Speaks and its thousands of supporters, AGRE will continue to serve as a moving force in the advancement of autism research.
Complex neuropsychiatric disorders such as autism are best approached by collaborative research efforts that pool large samples to generate meaningful results. AGRE exists to serve researchers in the field of autism and, as such, is committed to meeting the needs of individual researchers, institutions, and collaborative research groups.
The AGRE research program is located in the Autism Speaks offices in Los Angeles, California. In collaboration with the AGRE Steering Committee, the AGRE staff oversees protocols for phlebotomy, clinical evaluations, data collection and storage, pedigree generation, and the distribution of quality-controlled DNA, cell lines, and plasma samples. Biomaterial production and storage are located at the Rutgers University Cell and DNA Repository (RUCDR) directed by Dr. Jay Tischfield and under contract with AGRE.
Program highlights include:
Additional Program Highlights:
The AGRE Steering Committee is composed of advisors with backgrounds in genetics and bio-behavioral sciences who volunteer their time to provide oversight and direction for the AGRE program. The committee meets annually to review program progress and, throughout the course of the year, is routinely consulted when issues arise or advice is needed. Additionally, members review proposals submitted by outside researchers who are interested in partnering with AGRE to collect and share additional data, help identify outside research projects that would enhance the AGRE collection, and review researcher applications for access to the AGRE collection. John Constantino, MD, Chair of the AGRE Steering Committee, is a Professor of Psychiatry and Pediatrics at Washington University School of Medicine in St. Louis. Dr. Constantino's research interests include disorders of social development in children and psychiatric complications of neurodevelopmental disorders. Daniel Geschwind, M.D., Ph.D., a neurologist and neurogeneticist at UCLA, serves as the Chief Scientific Advisor for the AGRE program.
Regulatory review, approval, and oversight of AGRE's human subject research is provided by Western IRB (WIRB site, requires Internet Explorer), an AAHRPP-accredited Independent Review Board located in Olympia, WA. Click here for the current IRB approval notice.
All AGRE-approved researchers are given access to the data as they are made available on the AGRE researcher website. The AGRE collection contains the phenotypic and genotypic data outlined below. Please keep in mind that most families are in various stages of data collection. Therefore, not all data points are currently available for every member. Please check the website for availability before ordering biomaterials or downloading data.
Because there may be a substantial wait before a phlebotomist or psychometrician is able to visit the family in their home, AGRE participants are able to fill out some of the study questionnaires on-line prior to the initial home visit and during subsequent phases of the research project. This is made possible through AGRE’s online data acquisition system, referred to as the Online System for Clinical Research (OSCR). OSCR collects standard assessments such as the Social Communications Questionnaire (SCQ) and Social Responsiveness Scale (SRS), as well as medical history and demographic information forms. The system is updated periodically with new assessments and questionnaires for subjects to complete, allowing AGRE to continue data collection and add new questionnaires even after in-home data collection has been completed. OSCR also allows users to view summaries of how the user community as a whole has responded to specific questions, thus providing feedback to families and keeping them even more connected to the research project.
AGRE is committed to providing researchers with the highest quality of phenotypic data possible. Regular audits are conducted to ensure the integrity and accuracy of the information collected, in addition to on-going reviews of clinical and diagnostic assessments. All of AGRE's psychometricians are trained by a research-certified ADI-R/ADOS trainer and undergo reliability reviews throughout the data collection process. The reliability protocol requires re-rating ten percent of the ADI-R and ADOS assessments conducted by AGRE. Most of the assessments are scored and validated through the Internet System for Assessing Autistic Children (ISAAC), thereby eliminating manual scoring errors.