AGRE for Families >
(Note: Links go to way back archive for Autism Speak’s AGRE website.)
AGRE for Families
The Autism Genetic Resource Exchange (AGRE) is a research program for families who have two or more children on the autism spectrum. One of the biggest challenges for researchers is trying to recruit families and gather information for their research in a timely manner. AGRE helps accelerate the pace of autism research by taking these time-consuming steps out of the hands of researchers, so they can spend their time and effort analyzing the data and looking for answers now. AGRE gathers DNA, clinical, and medical information from families throughout the United States, making it the world’s first collaborative resource for autism research worldwide.
* Please note that AGRE is not enrolling any new families into the program at the present time, due to resource limitations. Please check back on our website for future updates regarding enrollment of new families.
Why I Participate in AGRE
When my sons (2 and 4 years old at the time) were first diagnosed it was a nightmare. I had a baby and two very disabled toddlers on my hands. Once they were diagnosed, a flood of early intervention and advocacy services came to our door. This was a huge relief to me and my husband. Up to that point we had been struggling to make the medical community understand that there was something wrong with the boys. Kyle (husband) and I were very happy when AGRE offered to draw blood and add our information to their database. The more good people working on this devastating disease the better we say! So with three children in diapers we began our long journey one day at a time…
Continue reading this family story here.
- Autism Speaks Selects Prometheus Research to Develop Integrated Data Management System
- Treating the Whole Person with Autism: Providing Comprehensive Care for Children and Adolescents with ASD
- Introducing Autism Speaks Science Digest
Autism Research Updates:
- New! Watershed symposia on autism
- An Interview with Barbara Wheeler, Associate Director of The USC University Center for Excellence in Developmental Disabilities Genetically engineered mice with autism
- ‘Autism’s like a snowflake’: Genetics, Environment and Autism
(Screenshot from Autism Speaks 2020 archive. The earlier version was not available. )
The Autism Genetic Resource Exchange (AGRE) is one of the pioneers in autism research today. Since its inception in 1997, AGRE has fueled many of the breakthroughs in autism research. AGRE is the largest private, open-access repository of clinical and genetic information dedicated to help autism research. Used by researchers around the world, AGRE enables open science to accelerate the search for the factors that influence autism – discoveries that will lead us to personalized, more effective treatments.
Currently, there are more than 150 research groups worldwide that are using the AGRE resource. With over 2,000 families in our database, AGRE has been cited in more than 165 science journals since the first publication in 2001.
As AGRE moves in a new direction, we are distinguishing ourselves as a Data Coordinating Center (DCC) by collaborating with outside researchers to receive de-identified data and biomaterials to enhance the AGRE resource. In our role as a DCC, we have discontinued our in-home data collection, while continuing to expand our resource with collaboration data and to make it available to researchers worldwide.
In 1997, the Cure Autism Now (CAN) foundation established AGRE as a shared resource to accelerate the pace of biological research in the field of autism. One of its goals was to create a centralized repository of the latest findings in genetics that would help autism researchers worldwide to ask the right questions and avoid duplication of efforts.
In 2007, CAN merged with Autism Speaks to bring all efforts and programs under one voice, making AGRE part of the Autism Speaks family. AGRE currently receives funding from Autism Speaks and the National Institute of Mental Health.
Although no longer collecting data in the home, AGRE is collaborating with outside research groups in its role as a Data Coordinating Center (DCC) to further expand the AGRE resource. As a DCC, AGRE will continue its mission to advance autism research by maintaining a thriving DNA repository and family registry for scientists around the world.
Over the last ten years, the AGRE resource has contributed to new science publications, laying the groundwork for discovering causes, treatments and preventions for autism.
- Study Finds Pregnancy and Birth Environment May Affect Development of Autism in Twins – July 04, 2011
- Phase 2 Results of Autism Genome Project Identify New Autism Genes – June 09, 2010
- AGRE cited in TIME Top 10 Medical Breakthroughs – December 08, 2009
- Autism Speaks AGRE and ATP, in Collaboration with the Autism Genome Project, Continue to Support Important Genetic Research and Findings – October 07, 2009
Recent Publications Using the AGRE Database
Click on a title below for summary information of the most recent publications, or click here for a comprehensive list.
J Psychiatry Neurosci. 2012 Oct 2;37(6):120058. doi: 10.1503/jpn.120058. [Epub ahead of print].
Mol Psychiatry. 2012 Sep 11. doi: 10.1038/mp.2012.126. [Epub ahead of print].
PLoS One. 2012;7(8):e43855. Epub 2012 Aug 27.
Transl Psychiatry. 2012 Apr 10;2:e100. doi: 10.1038/tp.2012.10
Mol Autism. 2012 Jun 9;3(1):4. [Epub ahead of print]
AGRE’s primary mission is to support autism researchers in their investigations. Click here for a list of scientific publications, citing the AGRE resource. How to locate research abstracts
To locate abstracts, visit the National Library of Medicine’s Pubmed database.
Use the search engine by entering the topic to find abstracts about your subject.
Each abstract also provides you with a link to related articles.
Browse the AGRE Family Newsletter (PDFs):
Autism Speaks at IMFAR 2011
|Autism Speaks was a sponsor of the 2011 International Meeting for Autism Research (IMFAR). |
IMFAR is an annual scientific meeting to exchange and disseminate new scientific progress among ASD researchers. The meeting aims promote exchange and dissemination of the latest scientific findings and to stimulate research progress in understanding the nature, causes, and treatments for ASD.
Tiffany Torigoe (AGRE Senior Recruitment Research Manager) reports on exciting findings presented at this year’s conference.
Alex Plank of Wrong Planet conducted some really informative interviews with key Autism Speaks science personnel.
He sat down with Clara Lajonchere, Vice President of Clinical Programs, to discuss the various programs she oversees, including AGRE:
Photos not available but here are the captions:
AS Science Board member John Elder Robison discusses the IMFAR technology demonstration
Geraldine Dawson, AS Chief Science Officer, presented the Autism Speaks strategic plan on the second day of IMFAR. She took time to talk to Alex about some current studies the organization is funding:
Official press conference: scientists discuss key studies presented during IMFAR.
Peter Bell, Executive Vice President of Programs and Services at Autism Speaks, discussing adults with autism.
See more at Autism Speaks Official Blog’s Media Highlights from IMFAR
Autism Research Updates
Dr. Barbara Wheeler has spent much of her career exploring ways to assure access to information and systems by under-represented groups, including individuals with intellectual disabilities and individuals and their families from diverse racial, cultural, and linguistic groups. In this interview, she discusses her NIH- funded projects on inclusion of minorities in research.
Scientists from Beth Israel Deaconess Medical Center and Harvard Medical School bred mice that have triple copies of the Ube3a gene, an abnormality that can lead to developmental delays, speech difficulties, seizures and walking or balance difficulties. This will allow researchers to test medications to see if the communication and social interaction of these mice improve.
This insightful article spotlights Dr. Robert Schultz, director of the Center for Autism Research (CAR) at The Children’s Hospital of Philadelphia (CHOP) and his theories on the relationship between genetics and the environment. CAR identified the first gene (a “common genetic variant”) linked to Autism Spectrum Disorder and has also identified a number of rare genetic mechanisms in related genes. The Center will be collaborating with AGRE later this year as it continues to explore autism using brain imaging.
Stanford University researchers find over-stimulating certain brain cells with light causes social deficits in mice. This finding could give us insight about how to develop drug treatments or devices to calm these brain cells for those with ASD. Rob Ring, Vice President of Translational Research at Autism Speaks, is quoted in the article.
After an examination of over 40 studies, researchers found that a range of factors around the time of birth, such as low birth weight and delivery complications, could be linked to the risk of autism later in life.
The North County Times reports on a recent study published in Neuron from researchers at UC San Diego. The study found that the left and right hemispheres of autistic toddlers’ brains don’t synchronize as well as do those of toddlers who don’t have autism. These findings could possibly alter the way autism is diagnosed and treated.
In the current issue of Neuron, a pair of studies (Levy et al. and Sanders et al.) identify several de novo copy-number variants (structural variations in the DNA that are not inherited from a parent) that together account for 5%–8%of cases when just one individual in a family has an autism spectrum disorder. These studies suggest hundreds of loci, or specific gene or DNA sequence locations on a chromosome, likely contribute to the complex genetic make-up of this group of disorders.
Download a free preview here.
New Study Reveals Autism Prevalence in South Korea Estimated to be 2.6% or 1 in 38 Children (in the archives here.)
(Autism Speaks press release)
Research by U.S., Korean and Canadian Investigators Identifies Children Not Yet Diagnosed and Has Potential to Increase Autism Spectrum Disorder Prevalence Estimates Worldwide.
Watershed Symposia on Autism
What causes autism?
Not long ago, the answer to this question would have been “we have no idea.” But these are exciting times in autism research. Scientists have discovered scores of genes implicated in autism risk.
They are deciphering how these genes control crucial activities within and between brain cells.In November 2011, scientists from around the world gathered in Arlington, Virginia, to discuss how the emerging picture of autism brain pathways can lead to effective treatments for those struggling with disabling symptoms.
Autism Spectrum Disorders—from Mechanisms to Therapies, organized by the scientific journals Cell and Neuron, was a special three-day meeting within the annual conference of the Society for Neuroscience.
Autism Speaks is proud to have co-sponsored two watershed documents that Neuron developed for the symposia.
SnapShot: Autism and the Synapse richly illustrates how 16 autism risk genes interact within and between cells that convey vital brain messages.
SnapShot: Genetics of Autism summarizes knowledge on scores of autism-risk genes—both their normal functions and how their mutations increase the risk of certain autism subtypes and syndromes.
These documents graphically capture how autism science has reached the level where researchers can begin developing safe and effective medicines to relieve disabling symptoms. Because this progress is made possible by you—our families and supporters—we are pleased to share these for download. Please click on the images or text links for your copies.
AS Research Programs
The Autism Clinical Trials Network (CTN) is a network of 8-13 medical centers that work together to carry out clinical trials for autism. The centers in the network work collaboratively to support trials by recruiting children, providing clinical expertise and following the protocols for each trial (multi-site, single protocol trial). Since the sites in the network share uniform practices for data collection, assessment training, and study methods, clinical trials are greatly expedited. The goal of the network is to rapidly screen new and promising compounds and other interventions and provide pilot data for larger multi-center federally funded trials. Possible interventions include pharmaceuticals (new compounds and off-label drugs), neutraceuticals (e.g. vitamins, minerals, fatty-acid supplements) and behavioral treatments (alone or in combination with pharmacologic treatments).
For more information, please visit: www.autismspeaks.org/science/programs/ctn.
The Autism Treatment Network (ATN) is a network of treatment and clinical care centers dedicated to improving medical care for children and adolescents with autism. The ATN seeks to fulfill its goal of improving medical treatment by establishing standards of clinical care based on clinical research and shared clinical practice. The ATN is dedicated to establishing these standards of care for autism in the medical community through open research collaboration, trainee mentorship, medical education and participation in conferences. The ATN is further committed to improving insurance reimbursement for autism-specific treatments to increase accessibility to these treatments community-wide.
For more information, please visit: www.autismspeaks.org/science/programs/atn.
The Autism Tissue Program (ATP) was established in 1998 to create a centralized source of brain tissue and associated clinical data from individuals with ASD and their families.
Brain tissue offers researchers a way to directly examine underlying processes in the brain. Without this precious resource, the basic understanding of the cellular and molecular basis of this disorder is not possible.
Studying brain tissue allows researchers to a) better understand the underlying biological mechanisms associated with autism; b) develop treatment targets; and c) develop better biomarkers.
The ATP participates in a nationwide campaign to help families understand the importance of brain tissue donation.
Because autism has been deemed the most heritable of the neurodevelopmental disorders, all family members are encouraged to register for donation. Researchers also need brain tissue from neurotypical controls, i.e. people who are neither autistic nor related to people with autism, to compare with tissue from affected individuals and their family members.
For more information, please visit: www.autismtissueprogram.org.
The Interactive Autism Network (IAN) is a program of Kennedy Krieger Institute that is sponsored by Autism Speaks. Families are able to participate in research by filling out online questionnaires about themselves and their families.
For more information, please visit www.ianresearch.org.
AGRE Research Collaborations
Presently, AGRE is operating as a Data Coordinating Center (DCC) with the following collaborative projects:
ACE Network-Phase II (ACE-II):
The University of California, Los Angeles (UCLA) Autism Center of Excellence (ACE) Network is working to increase knowledge of underrepresented individuals in autism genetic research.
This grant, funded by the National Institute of Mental of Health, will focus on the recruitment of African American families and will increase the overall AGRE biorepository and database.
Please visit the UCLA CART website for further information: http://www.semel.ucla.edu/autism/media
Autism Treatment Network (ATN):
The Autism Speaks Autism Treatment Network is a joint effort of medical centers committed to providing innovative and multidisciplinary care to individuals with ASD. Families registered at ATN sites and interested in participating in autism research are eligible for enrollment in the AGRE repository.
Please visit Autism Speaks ATN website for further information: http://www.autismspeaks.org/science/resources-programs/autism-treatment-network
Autism Speaks, AGRE’s parent company, has formed a committee called the Family Services Committee whose primary mission is to provide families with information about services, treatments, medications, etc., to help empower them to make informed decisions that will help their families improve the quality of life.
The Family Services Committee has created an online nationwide resource guide to provide individuals and families with local resources that service a variety of needs.For more information, please visit http://www.autismspeaks.org/community/fsdb/index.php
Family Services provides resources and information. If you have a question, contact the Autism Response Team today. If you’re concerned that your child may be affected with autism or if you’ve received a diagnosis, browse the Tools for Families section, where you’ll find our 100 Day Kit, and the Autism Video Glossary. If you’d like to do a quick search for service providers near you, select Find a Local Resource and browse the Resource Guide.
More With AGRE
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 work. In 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.