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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