Using the Web to Overcome the Lack of Genetic Samples in Autism ResearchDate First Published: May 25, 2010
Autism Research: Far BehindThe vast store of genetic samples available to cancer and diabetes researchers has led to major breakthroughs in treating both conditions. A large supply of genetic samples does not exist for autism. Why? The reason is simple: children with autism spectrum disorders (ASDs) receive most therapies and interventions at school or in local clinics (for occupational therapy, speech, social skills, etc.). They are not treated for their ASD in a major medical setting. There is no opportunity for researchers to work with families to get consent forms signed and blood samples drawn while some other medical treatment takes place. This lack of genetic samples is viewed as a major roadblock to progress in autism research. Catching Up: A Simple Way for Families to Provide SamplesNow, we hope to make it easier for families of children with ASDs to provide the genetic samples needed to advance autism research. People across the United States who have joined IAN -- the largest autism research project in the U.S. -- can register online to provide a genetic sample. They then receive lab forms by e-mail, and take them to a local LabCorp. (LabCorp is a national network of medical laboratories.) The lab takes a blood sample. Later, DNA is extracted and becomes part of a new collection of genetic information for autism research. Participating families will receive a $25 Amazon.com gift code* for each participating individual for a total of up to $100 per family. A valuable collection of genetic samples for autism research will be created quickly without bringing entire families into clinics for intensive interviews and evaluations. Who is Eligible?To participate:
A $25 Amazon gift code will be provided for each family member who provides a blood sample and has a completed:
Please note:
Privacy and SecurityFamilies who participate in this genetics study can rest assured that every measure has been taken to protect the security of their genetic and other private information. LabCorp will have only an IAN ID number on file and no other information about you, your child, or family. IAN, on the other hand, will not have access to any genetic information. Qualified researchers may later apply to match up a genetic sample to IAN information so they can study genetic differences between children with different profiles. For example, they may study whether there are genetic differences between children who did or did not regress, or children who do or do not have seizures. All information will be "de-identified," however. In other words, it will not include name, date of birth, or other identifying information. This study has been made possible by a grant from Autism Speaks. Current IAN Research Participants: Find out how to participate in IAN Genetics! Not an IAN Research Participant? Find out how to participate in IAN Genetics! |
The Interactive Autism Network (IAN) and the University of California - Los Angeles (UCLA) hope to accelerate autism research by greatly increasing the number of genetic samples available to researchers. In a recent pilot study, we demonstrated that we could quickly recruit U.S. families of children on the autism spectrum over the web, and then help them get their genetic samples submitted without having to leave their own neighborhood. We are now expanding this crucial study, recruiting new families and inviting more individuals within families to participate.
