IAN - Resources for Researchers

Date Last Updated: May 6, 2008

The IAN Project

IAN, the Interactive Autism Network, is an innovative online initiative of the Kennedy Krieger Institute and is sponsored by Autism Speaks. IAN's goal is to accelerate autism spectrum disorder (ASD) research. To address the questions that so many researchers have, IAN provides a wide variety of services and tools free of charge, including:

• Subject recruitment assistance
• Extensive longitudinal and cross-sectional data set
• Online networking and collaboration tools
• An information resource for clients and research participants
• A place to share your research with the public

These services are available through IAN Research, IAN Exchange, and IAN Community.

IAN Research (www.IANresearch.org)

IAN Research is an online longitudinal database and research registry. Families and affected individuals throughout the U.S. share their information with autism researchers and are notified about studies for which they qualify. A variety of data about individuals with ASD, siblings, and parents is gathered through a series of online questionnaires. Some of these questionnaires are standardized, such as the Social Responsiveness Scale, while others on topics such as pregnancy, treatments, and parental depression are developed in partnership with subject matter experts. Based on the priorities expressed by researchers and families, IAN periodically adds new questionnaires to the protocol. In its first year, IAN Research registered over 22,000 participants including over 8,000 individuals with ASD.

IAN Research is a research study under the auspices of the Johns Hopkins Medicine IRB (Principal Investigator: Paul Law, MD, MPH).

IAN Research offers these valuable services to researchers:

Subject Recruitment Assistance

To obtain subject recruitment assistance from IAN, researchers complete an online application. If a research study qualifies, IAN queries the IAN Research database based on the study's recruitment criteria, identifies participants who qualify, and sends potential participants the study's IRB-approved recruitment letter via email. Those interested in participating will contact the study for further information. This service is available in the U.S. only.

• Apply to use IAN Subject Recruitment Assistance.
• View studies using IAN for Subject Recruitment Assistance.

Longitudinal and Cross-sectional Data Set

IAN Research offers de-identified data to qualified research studies throughout the world. In addition, IAN provides a code book, an IAN Exchange user community, and phone and email user support.

• Apply to access the IAN Data Set.
• Review our baseline IAN questionnaires.
• Peruse preliminary results in the IAN Research Reports we share with participating families.

IAN Exchange (www.IANexchange.org)

IAN Exchange is an online professional community for autism researchers and associates. It provides a platform for collaborative activities, knowledge management, professional networking, and lifelong learning. Using IAN Exchange, researchers connect across divides of geography and discipline to become part of a community focused on a shared challenge -- to understand the causes of ASDs, to find effective treatments, and to translate this knowledge into tangible solutions.

IAN Community (www.IANcommunity.org)

You are now visiting IAN Community -- where the community-at-large learns about autism research and influences its direction. It provides articles by leaders in the field, discussion forums focused on the research process, and preliminary findings from IAN Research so that participants can see the value of their ongoing contributions.

Researchers are invited to prepare articles for publication on IAN Community -- an opportunity to share findings and insights with the people most affected by their work. Peruse the Guidelines for Authors or contact us for more information.

Spread the Word!

Please tell colleagues and affected families about IAN. We are happy to provide informational materials. Learn more.