Ten years ago, a family collection for the genetic study of autism was little more than a dream in the hearts and minds of family members and scientists who started Cure Autism Now. Their goal then, and still is to help scientists find
the genes that would lead to new therapies and perhaps, even a cure, for individuals diagnosed with autism spectrum disorders.
"I am personally very proud to be on the team that built this incredibly valuable resource for science," says Marianne Toedtman. "I know in my heart, that one day the data we've collected will lead researchers to a greater understanding of autism and how it can be treated and perhaps cured."
-Marianne Toedtman
AGRE team member since 1997
2004 SUMMARY REPORT
FAMILY RECRUITMENT
AGRE will continue to make recruitment a top priority in order to make the greatest number of family samples available to the research community. In 2005, Cure Autism Now will continue its partnership with researchers at the University of California, Los Angeles (UCLA). The information and samples gathered will be broadly shared with researchers interested in the study of autism. All family data collected by AGRE is kept confidential to protect a family's identity. In 2004 AGRE exhibited at seven national autism conferences, and presented workshops at four conferences
FAMILY SATISFACTION
Families who participated in AGRE are asked to complete a satisfaction survey designed to improve communication and better understand families' needs. In 2004 responses from 140 families highlight the overall positive view families have of AGRE, while pointing out that feedback is a priority for families, who want to know research updates and important scientific findings.
"Having the blood draw done in the comfort of my own home was so much easier on my children, who hate needles of any sort. That the procedure went so smoothly is testimony to Linda's (phlebotomist) great people skills and clinical expertise when it comes to her job".
-AGRE Family
Arden Hills MN
Does your family or a family you know have two or more children diagnosed with autism, Pervasive Developmental Disorder (PDD) or Asperger's Disorder? This is an opportunity for families to contribute to scientific research. Contact AGRE at 888-AUTISM-2 (288-4762) or email Tiffany Torigoe, Family Recruiter.
SERVING THE RESEARCH COMMUNITY
AGRE's 2004 research activities include:
- Researchers can access information from over 600 families for use in their investigations.
- There are 135 AGRE-approved researchers who have access to study families in the AGRE database.
- AGRE samples were cited in more than 17 articles in major medical and science journals in 2004 alone, and in 37 since the first publication in 2001.
For a complete bibliography of published studies using the AGRE set of families, please email the Researcher Liaison, Vlad Kustanovich Ph.D.
|
|
|
|
|
|
|
|
||||||
