The IAN Genetics Project: Using the Web to Overcome the Lack of Genetic Samples in Autism Research
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 to invite more individuals within families to participate.
IAN Research participants may now join the IAN Genetics study regardless of their own autism status or their relationship to an individual with ASD.
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 DNA 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 individuals with ASD and their families to provide the genetic samples needed to advance autism research. People across the United States who have joined IAN Research -- the nation's largest autism research project -- can register online to provide a genetic sample, either through blood draw or saliva collection. For a blood draw, 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. For saliva collection, participants receive a home saliva collection kit and mail back their sample. Later, DNA is extracted and becomes part of a new collection of genetic information for autism research.
Individuals who provide a DNA sample and complete the required brief questionnaire(s) will each receive a $25 Amazon.com gift code*.
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?
- An individual must be a consented participant in IAN Research.
- Adults (individuals aged 18 years or older) must have consented for themselves or been consented by a legally authorized representative.
- Children must be aged 4 years or older and under age 18 years.
These individuals may join IAN Genetics regardless of their own autism status or their relationship to an individual with an ASD.
A $25 Amazon gift code will be provided for each individual who provides a DNA 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 DNA 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 participate in this project as their DNA samples are already available to autism researchers.
How do I Join?
Current IAN Research participants: Eligible individuals should log into their IAN Research account and complete the IAN Genetics Consent Survey listed under their name in their IAN Research Family Profile.
Not an IAN Research participant and want to participate in IAN Genetics? Please join IAN Research and complete your Family Profile. An IAN Genetics Consent Survey will appear under the names of qualifying individuals in your Family Profile.
Our Sincere Thanks
The need for genetic samples in autism research is urgent. We hope you will consider participating in this effort to increase the number of genetic samples available to researchers. Thank you so much for all you do on behalf of autism research.
IAN’s Research Manager, Dr. Alison Marvin, can be reached at 443-923-4143, 866-348-3440 (toll free), or IANgenetics@kennedykrieger.org.