Using the Web to Overcome the Lack of Genetic Samples in Autism Research
Date First Published: May 25, 2010
Date Last Updated: May 29, 2013
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.
Autism Research: Far Behind
The 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 Samples
Now, 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 nation's largest autism research project -- can register online to provide a genetic sample. They then receive lab forms by e-mail and arrange for a blood draw locally. They do not need to bring insurance cards or money to the blood draw as the study pays for the lab work. The lab sends the blood sample to the study team. 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.
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?
- A family must have at least one child with an autism spectrum disorder (ASD).
- The child with ASD must be between the ages of 4 and 17.
- It is preferred, but not required, that both biological parents be willing to provide a blood sample.
- If there are any unaffected siblings between the ages of 4 and 17 available, one of them may also participate.
A $25 Amazon gift code will be provided for each family member who provides a blood sample and has a completed:
- National Database for Autism Research (NDAR) Consent – both adults and children
- Social Communication Questionnaire (SCQ) – children only
- Families who provided blood samples for their children in an earlier phase of IAN Genetics can now do so for parents, too!
- Families who participated in the Simons Simplex Collection (SSC) project should not also participate in this project as their DNA samples are already available to autism researchers.
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!