Data Services

About IAN Research Data

Please note: The IAN research registry closed on June 30, 2019. We are no longer enrolling participants or collecting new data. The de-identified data set is available to researchers on a limited basis. To inquire further, please contact IAN’s principal investigator, Dr. Paul Lipkin at lipkin@kennedykrieger.org.

IAN Research offers de-identified data to qualified researchers on a limited basis. Please note that there is a cost for these services. In addition, IAN provides a code book (see links below).

IAN Research has more than 54,000 consented participants. A variety of data about individuals with ASD, siblings, and parents was 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.

• Review our baseline IAN questionnaires.
• View our interactive code book/data dictionary for surveys after February 2013.
• View our interactive code book/data dictionary for surveys before February 2013.
• Peruse preliminary results in the IAN Research Reports we share with participating families.