Archived | Autism Speaks AGRE: Autism Genetic Resource Exchange | Circa 2007 #NotAnAutisticAlly

Not An Autistic Ally text on blue background with a DNA strand. Logos for Autism Speaks, AGRE, Cure Autism Now and NIH are included.

AGRE: Autism Genetic Resource Exchange

Does your family have two or more children diagnosed with autism, PDD or Asperger’s syndrome? Tell us about your family:

Complete the secure online Family Contact Form or Print the Family Contact Form

AGRE’s Key Objectives:

Continue commitment to recruit families with two or more children diagnosed with autism, PDD or Asperger’s syndrome. Recruiting additional families will build the resource to its largest capacity, thereby increasing adequate statistical power for genetic analysis.


Increase public and private partnerships. Collaborations will position AGRE to further support new investigators, aid in rapid replication of new findings, and facilitate the immediate application of the latest tools and technologies.


Expand data collection to broaden the data available to researchers. AGRE hopes to include data on social responsiveness, speech and language development, and behavior patterns.


Create a “library of genetic findings” which will serve as a portal for autism researchers worldwide. Creating a centralized repository of the latest findings in genetics, will aid researchers worldwide interested in the field to ask the right questions and avoid duplication of efforts.


AGRE Participation: AGRE requires families to complete a series of activity steps involving three visits to the family’s home-the diagnostic assessment, the family blood draw and a diagnostic physician visit. Find out more. 

Research Updates: Over the last five years, the AGRE resource has contributed to new science publications, laying the groundwork for discovering causes, treatments and a cure for autism. Read updates.

To learn more, please visit AGRE’s Frequently Asked Questions.If you still have questions, comments or concerns, feel free to contact the AGRE staff. 

Browse the AGRE Family Newsletter: (PDFs)
2006: Winter | 2006: Fall | 2005 | 2004


Screenshot of AGRE Family Contact Form. Text below.

Family Contact Form

Does your family have two or more children with autism, PDD, or Aspergerís Syndrome?


If your family’s information matches this description, please complete the information form below. AGRE is only able to accept families from the United States at this time. 

ALERT: You may have heard through your local newspaper, TV, or radio station that AGRE is beginning a study for families with one or more members diagnosed on the autism spectrum.

Please note, however, that this study has not yet begun. Currently, AGRE is still recruiting families with two or more members diagnosed on the autism spectrum.

Although we are in the planning stages of a study for families with just one member diagnosed with autism, PDD, or Aspergerís syndrome, we have not yet begun recruiting for this study. Please keep checking back to our website for further updates.


AGRE Family Contact Form Print Version

AGRE Autism Genetic Resource Exchange

Founded by Cure Autism Now

A Resource for the Study of Autism Spectrum Disorders


The Autism Genetic Resource Exchange (AGRE)


AGRE was created by Cure Autism Now to advance research in Autism Spectrum Disorders. Blood samples and clinical data are obtained from families that have two or more children diagnosed with autism, PDD or Asperger’s syndrome. These samples, along with the accompanying clinical data, are made readily available to AGRE-approved researchers.


AGRE Collaborations


One of AGRE’s most important goals is to identify causes of autism as quickly as possible by promoting collaborations and sharing among researchers. Before beginning participation, AGRE staff will inform you of any AGRE research collaboration for which your family may be eligible.


Enrollment


AGRE requests that families complete and sign the enclosed AGRE Family Contact Form.

Once this form is received in the AGRE office, staff will contact families to discuss eligibility.
founded by AGRE Research Program

5455 Wilshire Blvd., Suite 2250 Los Angeles, CA 90036-4234 (866) 612-2473 info@familyagre.org


Family Recruitment
(866) 612-2473
(323) 297-4732 Fax: (323) 549-0547


Cure Autism Now
(323) 549-0500
Fax: (323) 549-0547 info@cureautismnow.org http://www.cureautismnow.org


A Resource for the Study of Autism Spectrum Disorders


AGRE Participation

AGRE requires families to complete a series of activity steps involving three visits to the family’s home _ the diagnostic assessment, the family blood draw and a physician visit. The order of the activity steps may vary depending on a family’s location and schedule. In addition to home visits, family information may be collected in a telephone interview or through mail surveys.


AGRE Research Program


5455 Wilshire Blvd., Suite 2250 Los Angeles, CA 90036-4234 (866) 612-2473 info@familyagre.org


Family Recruitment
(866) 612-2473
(323) 297-4732 Fax: (323) 549-0547


Cure Autism Now
(323) 549-0500
Fax: (323) 549-0547

info@cureautismnow.org http://www.cureautismnow.org


AGRE Participation

Enrollment

AGRE requests families with two or more children diagnosed with autism, PDD, or Asperger’s syndrome complete an AGRE Family Contact form.


Click here to complete the secure online Family Contact form or click to print the Family Contact form . 

Confidentiality

All family data, DNA samples, and other identifying information collected by AGRE are kept confidential and coded with a confidential ID number to unique identifier to protect your family’s identity. Family contact information is not shared outside of AGRE without your permission.

Confirming the Diagnosis

To confirm that participants have been correctly diagnosed, AGRE staff visit families in their homes to conduct a parent interview, and an assessment on each affected individual.

Clinical Data Collection

AGRE collects clinical data using standardized assessments & a family interview that will aid researchers in studying autism. AGRE staff conducts home visits and telephone interviews to complete data collection. 

Diagnostic Physician Visit

An AGRE pediatric neurologist (or developmental pediatrician) visits families to collect family histories and to look for traits and hereditary syndromes that may predispose individuals and families to autism. Family medical information is collected and physical exams are completed on affected and unaffected siblings. 

Family Blood Collection

AGRE staff arranges for a phlebotomist, skilled in working with children with autism, to visit the family home and collect blood on all participating family members. Once completed, the blood is packaged, labeled with a confidential ID number, and shipped to the Rutgers University Cell and DNA Repository (RUCDR) in New Jersey . 

The AGRE Gene Bank

Once a family’s blood samples are received at RUCDR, samples are immortalized, a laboratory process that provides an unlimited supply of cell lines and DNA to researchers. This process takes 3 to 4 months. Once immortalized the samples are stored and prepared for distribution at RUCDR. 

Researcher Access

Any qualified and approved researcher whose focus is autism research is eligible to utilize the resource. The AGRE Researcher Review Committee must approve all researcher applications. 

Scientific Oversight

The AGRE Steering Committee provides scientific direction for AGRE. The committee is composed of experts in genetics and neurological disorders who volunteer their time. AGRE has been approved by an Institutional Review Board (IRB) to ensure the protection of research participants. 

See Also: Frequently Asked Questions about AGRE 


Rutgers | Welcome

Welcome to the Rutgers University Cell and DNA Repository(RUCDR) website. RUCDR is the  largest university based repository in the world. We are located on the Busch Campus of Rutgers University, Piscataway, New Jersey. 

Our Mission

Rutgers University Cell and DNA Repository (RUCDR) plays a key role in research aimed at understanding the genetic causes of common, complex diseases. RUCDR activities will enable gene discovery leading to diagnoses, treatments and, eventually, cures for these diseases. RUCDR assists researchers throughout the world by providing the highest quality biomaterials, technical consultation, and logistical support. 

Order

You can order biomaterials and apply for phenotypic/genotypic data, depending on the project. Click here to view available materials and ordering requirements for each repository collection.

Contact Information


To contact us about specific projects, or to request materials, or to follow up on specific questions/requests, please use our 
RUCDR Web Portal: http://rucdr.rutgers.edu. 

 

Please contact Dana Witt if you have difficulty accessing the portal.

To learn more about RUCDR and its services, please contact us at:
Phone: 732-445-1498
Fax: 732-445-1149


Address:

Nelson Biological Laboratories,
604 Alison Road,
Piscataway, New Jersey 08854. 
Email: jay@biology.rutgers.edu
Website: http://www.rucdr.org


AGRE Frequently Asked Questions

A: The Autism Genetic Resource Exchange (AGRE) is a repository (gene bank) of genetic and clinical information that is made available to autism researchers worldwide. AGRE was created by Cure Autism Now to advance genetic research in autism spectrum disorders. AGRE collects DNA samples and clinical data from families that have two or more members diagnosed with autism or an autism spectrum disorder (known as “multiplex” families). 

Q: Why does AGRE only recruit families with 2 or more affected children?

A: We focus on families where two or more children are affected with an autism spectrum disorder (ASD), because it helps us to identify the families where genes are more likely to play a crucial role. The more people in a family with an ASD, the greater the likelihood that genes are involved.

Q: Who is on the AGRE Team?

A: The AGRE team is made up of clinicians, researchers, psychologists, medical doctors, and other staff that coordinate all aspects of family participation, including scheduling family visits, conducting clinical and medical assessments, processing biomaterials and clinical data, and responding to family requests. AGRE is located in the Cure Autism Now offices in Los Angeles, California.

Q: What does my participation involve?

A: The AGRE project requires families to complete a series of activity steps involving diagnostic assessments, medical evaluations, and a family blood draw. Family home visits generally take place on three separate occasions:

(1) Diagnostic evaluations will be performed with one parent and each affected child over the course of a day;

(2) All family members will participate in the blood draw, which will last approximately 1-2 hours; and

(3) A pediatric neurologist (or developmental pediatrician) will perform medical examinations of the children and will conduct a medical history interview with one parent (approximately 4 hours). The duration of each visit will vary from family to family.

Q: Where are the assessments and blood draws performed?

A: What makes the AGRE program unique is that all of the study steps are performed in the family home. AGRE will organize trips to various parts of the country and schedule several families in a particular area during each trip. A separate trip will be arranged for each of the three study steps, which means that families may wait up to a year or more to complete the study. 

Q: Who is paying for this?

A: Cure Autism Now and the National Institute of Mental Health (NIMH) (http://www.nimh.nih.gov ) both provide funding for AGRE.

There is no cost to your family to participate. 

Q: Will our family’s information be kept confidential?

A: Yes. All data and blood collected by AGRE are kept strictly confidential and coded with a confidential ID number to protect your family’s identity. No family contact information will be shared with anyone outside of AGRE without your permission. 

Q: Should I get childcare when AGRE is visiting my home?

A: Staff visits to the family home tend to be lengthy, involving interviews with the parent and testing of the affected children. It is often helpful to have extra help so that you and your children can participate fully in the assessments. AGRE will gladly reimburse you for your childcare expenses up to $75.00 a day. 

Q: What clinical information can my family expect from AGRE?

A: After a family has completed the clinical assessments and had their blood drawn, AGRE will provide a feedback letter summarizing the results of the affected children’s diagnostic evaluations. 

Q: What blood test results can my family expect from AGRE?

A: Once your family’s blood samples are processed, samples from one affected child are sent to an outside laboratory for Fragile X testing and karyotyping (chromosomal analysis). Although AGRE does not routinely release the results of lab tests to families, you may request to be informed of any “positive” lab results (i.e., evidence of Fragile X syndrome or a chromosomal abnormality). AGRE staff are not allowed to discuss the results of these medical tests with you directly, but will arrange for your family physician or genetic counselor to convey these results to you. 

Q: Is AGRE actually doing genetic research?

A: No. AGRE is an open resource – a repository that provides DNA samples and clinical data from multiplex families to qualified researchers.

Q: Who will use the AGRE resource and for what purpose?

A: Any qualified researcher whose focus is autism research is eligible to utilize the AGRE resource. The AGRE Researcher Review Committee must approve all researcher applications. 

Q: Who provides scientific oversight of the project?

A: AGRE has a Scientific Advisory Board composed of experts in genetics and neurological disorders that provides scientific direction for AGRE. The AGRE research program has been approved by an outside Institutional Review Board to ensure the protection of all research participants. 

Q: How are DNA samples made available to qualified researchers?

A: The process of immortalizing cell lines – a laboratory technique that allows white blood cells to reproduce indefinitely – provides an unlimited supply of cell lines and DNA to researchers. Once immortalized, the samples are stored and ready for distribution. 

Q: Where will the DNA samples be stored?

A: AGRE ships blood samples in a customized kit to the Rutgers University Cell and DNA Repository ( http://www.rucdr.org ) in New Jersey. It takes approximately three to four months for the cell lines to be immortalized and prepared for distribution. 

Q: Can I participate in AGRE if my family is already in another genetic study?

A: AGRE does not recruit families who participate in other collaborative genetic studies. Researchers frequently combine data sets from various sources in order to identify the genes most likely associated with autism. Because the identities of AGRE families are kept confidential, researchers will not know when a family is duplicated in the combined data set. As a result, families participating in more than one study could invalidate the results of their research. It is therefore important to let AGRE staff know if your family has participated in another genetic study. 


Screenshot of AGRE Research updates page. Text below.

AGRE Research Updates



AGRE’s primary mission is to support autism researchers in their investigations. Below is a list of scientific publications, indexed by year, citing the AGRE resource. A brief research summary, prepared by AGRE’s Researcher Liaison, Vlad Kustanovich Ph.D., is available for recent publications.

2005  |  2004  |  2003  |  2002  |  2001 

How to locate research abstracts
To locate abstracts, visit the National Library of Medicine’s Pubmeddatabase.
Use the search engine by entering the topic to find abstract about your subject.
Each abstract also provides you with a link to related articles.

AGRE Research Activities

  • Researchers can access information from over 640 families for use in their investigations
  • There are 136 AGRE approved researchers who have access to study families
  • AGRE samples were cited in more than 43 science journals since the first publication in 2001


Update:

New Data Available For Download
Pedigrees of 949 Families

AGRE provides biomaterials and an unprecedented resource of phenotype and genotype information that is freely available for analysis by members of the scientific community.
obtain access

AGRE Frequently Asked Questions
Answers to commmon questions about AGRE.

ISAAC User Guide:
A step-by-step guide for downloading phenotype data from ISAAC.

GENOTYPE DATA: 
NEW!High-density SNP (500K Affymetrix) data on 777 families contributed by the Autism Consortium. (contact researcher liaison)
-Whole Genome Scan and Finemapping data on 356 families.
-Genome-wide High-density 10K SNP data on 426families from the Autism Genome Project (AGP).
-High-density SNP (2007 SNPs) data of Chr.17 on 219 families contributed by the UCLA Collaborative Autism Genetics Project.


PHENOTYPE DATA: 
ADI-R, ADOS, Raven, and Handedness testing results with all interview data points and computer scored algorithm results are available for download.
Medical histories, Physical Neurological exam data, Peabody scores, and Vineland scores are also available. 
NEW!Language History Data
NEW!Social Responsiveness Scale Data

CITATION GUIDELINES
Instructions on how to cite AGRE in publications.

PAPERS CITING AGRE CONSORTIUM 

AGRE participants may also be interested in the following studies:
>> Autism Tissue Program 
>> UCLA Center for Autism Research and Treatment (CART) Program


APPLYING FOR ACCESS TO AGRE DATA AND BIOMATERIALS


In order to gain access to online AGRE phenotypic and genotypic data, as well as to order biomaterials (DNA, cell lines and serum*), please complete the following steps:

1) Fill out the AGRE Access Application online 
2) Print, fill out 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.

Please note that AGRE requires that the Principal Investigator obtain IRB approval or exemption and sign the AGRE Researcher Agreement in order to gain access to the AGRE sample set. 

Access the Biomaterials Online Order Form or the Data Download Area if you have already submitted your AGRE Access Application and Biomaterials Application and have received your user code. 

* Please Note: Serum samples are NOT available for every family in the AGRE repository. Please contact the Researcher Liaison for sample availability.


AGRE RESEARCHER ACCESS APPLICATION

To apply for access to AGRE data and biomaterials, please fill in the following form. If you have any questions regarding your application you may contact the AGRE Researcher Liaison at 323-931-6577 ext.731. Thank you for your interest in AGRE.


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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