Current IAN Research Participants: How to Take Part in the IAN Autism Genetics Study

Date First Published: May 25, 2010
Date Last Updated: March 1, 2012

Participation in the IAN Autism Genetics Study involves a free blood draw for a child with ASD, age 4-17, and both of his or her biological parents. If any unaffected siblings age 4-17 are available, one of them may also provide a blood sample. Later, DNA is extracted and becomes part of a new collection of genetic information for autism research.

To participate in the study:

1. Check your email for a study invitation from IANgenetics@kennedykrieger.org. If you don’t find one, contact Dr. Alison Marvin at 443-923-4143, 866-348-3440 (toll free), or IANgenetics@kennedykrieger.org and she will send you one.
    
2. Click on the link in the email to view the online study consent form. After reading the consent form, click “Yes” or “No” to join the study or not, as you choose.
   
   Please note: Each parent provides consent for him- or herself. The first to click the link in their email will also be asked to consent for their child with ASD and one unaffected sibling (if there is one). By default, we list the oldest unaffected sibling between the ages of 4 and 17. If you’d like a different sibling to participate instead, please let us know.
    
3. As soon as consent to participate is granted for any one person, we will send an email with additional instructions and lab forms for each participating individual. Please contact us if you do not receive these.

Preparing Your Child for the Blood Draw: A Social Story

We know children, with and without an ASD, cope better when they face a new situation knowing what to expect. That is why we have prepared a Social Story you can use to prepare your child for the blood draw. (Social Stories, originally invented by Carol Gray, help children with ASD by presenting information about what to expect in a given situation, step by step.)

Token of Our Thanks: $25 Gift for Each Participating Family Member

We truly understand it is not easy for parents of children with ASD to make time in their busy lives to go to yet another medical appointment, and that taking children for blood draws is rarely a fun activity. That is why we are providing a small token of our thanks.

IAN will send you a $25 Amazon.com gift code* for each person in your family who:

• Has submitted a blood sample.
• Has, on IAN Research, a completed:
  
  
  • National Database for Autism Research (NDAR) Consent -- both children and adults
  • Social Communication Questionnaire (SCQ) -- children only

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.

Need Assistance? The IAN Genetics Study Coordinator, Dr. Alison Marvin, can be reached at 443-923-4143, 866-348-3440 (toll free), or IANgenetics@kennedykrieger.org.