IAN Data Use Instructions
IAN Research is an online longitudinal database and research registry created to accelerate autism research. 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.
IAN Research now has over 37,000 consented participants.
Autism researchers can apply to access the de-identified IAN data set by submitting the documents described below.
1. IAN Online Data Access Application Form
This is the first step in the data use application process. Please complete this online form, which can be accessed by clicking here.
This is an online form you can complete from your computer.
2. Copy of IRB Approval for Your Research Study
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 here to check.
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.
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. Original Signed Copy of the IAN Data Access Agreement
This document states the nature of the relationship between the IAN Research Database and the researcher. An original signed copy will be required as part of the application process. Please sign and mail this IAN Research Database Data Access Agreement to:
IAN Research, Department of Medical Informatics
For this document, we must have an original signature.
If you have any questions, please contact us at researchteam@IANproject.org. We are here to help.