More than 1,000 SSC Families Have Registered with SSC@IAN

Date Last Updated: January 20, 2012

As the site-based phase of the Simons Simplex Collection (SSC) project draws to a close, the Simons Foundation wants very much to stay in touch with the more than 2,700 SSC families. As addresses and emails change, they don’t want to lose you! They hope to share findings and possibly offer opportunities to take part in future SSC-related studies or surveys.

That’s why they have partnered with the Interactive Autism Network (IAN) to create an online registry and resource for SSC families called the Simons Simplex Community @ Interactive Autism Network (SSC@IAN). Through SSC@IAN, you will learn about research findings made possible by your participation in the SSC. You will also hear about opportunities to participate in future SSC-focused research.

So far, 1,000 SSC families have registered with SSC@IAN, and nearly 700 more have granted permission for SSC@IAN to contact them.

• Already registered with SSC@IAN? Thank you!
• Gave permission for IAN to contact you, but not yet registered with SSC@IAN? Check your email for a note from SSC@IAN, and click on the link provided to register.
• Never gave permission for your local SSC site to share your contact information with IAN? Contact your site study coordinator for assistance.
  (SSC@IAN can’t contact you with information until this permission is given.)

News and Research Opportunities

Families that register receive the SSC@IAN e-newsletter, which reports on scientific findings made possible by SSC families, and includes articles like:

• Striking Differences in the Social Brain Found in Children with ASD, "Unaffected" Siblings, and Typical Children
• Searching in a "Smaller Haystack" Yields Promising Findings in Autism Genetics

More than 90 autism studies are already using SSC data to investigate a wide variety of questions.

In addition, the Simons Foundation is inviting even more researchers to “conduct bold, imaginative, rigorous, and relevant research” using the existing SSC data or, in some cases, gathering new information from willing SSC families. SSC@IAN will let families know when there are opportunities to take part in clinic-based or online studies expanding on the original SSC.

Currently, SSC@IAN families with an affected child between the ages of 6 and 15 are being invited to participate in the IAN Bullying Survey, which explores a variety of bullying situations and the extent of this problem in the lives of children on the autism spectrum.

Watch a news story about the Bullying Survey featuring a young girl with Asperger’s and SSC@IAN’s Dr. Connie Anderson.

The Simons Simplex Collection is a visionary project that has far exceeded its creators’ expectations. At its heart are families like yours who give their time, their insight, and their DNA (via blood samples) to advance autism research. Through SSC@IAN, you can continue to be a part of this innovative initiative.

If you have any questions about SSC@IAN, please contact the SSC@IAN Research Coordinator, Tara Zandi, at 443-923-4153 or SSC@IANproject.org.