I'm Not Enrolled in IAN Research: How Do I Take Part in the IAN Autism Genetics Study?
Date First Published: May 25, 2010
Date Last Updated: March 1, 2012
To participate in this vital autism genetics study, you will first need to enroll in IAN Research - the nation's largest autism research project. Once you have completed your initial registration and filled out your "Family Profile" -- which is a list of family members -- you will be eligible to participate in the autism genetics study.
Participation in the study involves a free blood draw for family members in their own local area. Later, DNA is extracted and becomes part of a new collection of genetic information for autism research.
To participate:
- Enroll in IAN Research.
IAN Research has one goal: accelerating autism research in as many directions as possible. Families of children with ASD answer online questionnaires at their convenience about their child's diagnosis, challenges, and treatments. This information helps researchers explore a variety of questions in autism. If you need assistance during registration, call the IAN Research team at 866-348-3440 or email us.
- Complete your "Family Profile" by adding all family members, including any children with ASD, their unaffected siblings, and your child’s other biological parent. Invite the other parent to join by clicking the “invite this person” link, and then ask them to check their email for a note from IAN with instructions for how to join. (As an independent adult, the other parent must consent to participate in the project for him- or herself.) After they have joined IAN Research, continue to step 3.
- Contact Dr. Alison Marvin at 443-923-4143, 866-348-3440 (toll free), or IANgenetics@kennedykrieger.org. She will send you an email with a link to the online study consent form.
- 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.
- 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.
