About IAN Research Data
IAN Research offers de-identified data to qualified research studies throughout the world. In addition, IAN provides a code book and phone and email support. Please note that there is a cost for these services.
IAN Research now has more than 54,000 consented participants. 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.
- 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.
Apply for IAN Research Data
Autism researchers can apply to access the de-identified IAN data set by following this procedure:
2. Mail, e-mail, or fax a copy of IRB approval for your research study
We will need evidence that your study is approved by an IRB. Include a copy of the letter from the Principal Investigator's current Institutional Review Board (IRB) indicating that the proposed data analysis plan was either approved by the IRB, granted an exemption by the IRB, or determined to be non-Human Subject Research by the IRB.
Please note: The IRB reviewing the research described in your application must have an approved domestic or international Federal Wide Assurance (FWA) issued by the U.S. Department of Health and Human Services (HHS) Office of Human Research Protections (OHRP). Most IRBs are registered in this way. However, if you are not sure about your IRB, you can visit the OHRP website to check.
We do not need an original signature for this document. Therefore, you may mail it to the address below, fax it to 443-923-4145, or e-mail it to researchteam@IANproject.org.
3. Mail an original signed copy of the IAN Data Access Agreement
Please send, via conventional mail, to the address below an original signed IAN Research Database Data Access Agreement.This document states the nature of the relationship between the IAN Research Database and the researcher.
IAN Research, Department of Medical Informatics
Kennedy Krieger Institute
1st Floor Painter Building
3825 Greenspring Ave.
Baltimore, MD 21211
For this document, we must have an original signature. Please mail. Do not fax or e-mail.
If you have any questions, please contact us at researchteam@IANproject.org. We are here to help.