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How IAN Research Can Make a Difference

Date First Published: April 2, 2007
Date Last Updated: April 20, 2012

In research lies hope for the future ...

IAN Research is a groundbreaking project which is attempting to collect the largest ever data-set on individuals with ASDs. We invite you to participate!

By answering secure online questionnaires, and without ever leaving the comfort of home, parents of children with ASDs can provide crucial information about their child's diagnosis, behavior, environment, and services received. At the same time, adults with ASDs can share valuable information about their experiences, strengths, and needs. (At this point, there is little information about how adults with ASD in the United States are doing. The IAN Project hopes to change that.)

Researchers from throughout the world will work with the information participants provide to learn about the effect and interaction of factors such as genetics, environment, and treatment, as well as the current situation, well-being, and needs of those affected by ASD. IAN Research will also serve as a research registry, matching participants who give their permission with other local and national autism research projects studying ASDs.

The goal overall is to accelerate and expand autism spectrum disorder research.

Learn more about IAN Research:

IAN Special Projects: More Ways We (and You) Can Contribute to ASD Research

As the world's largest online autism research project, IAN has gathered information from thousands of individuals and families that researchers are using to explore many questions in autism. We have also been able to help researchers find participants for more than 300 studies so far. Because of our special role in ASD research, we have been able to partner with other organizations interested in the same thing: getting more autism research done faster. These special projects include:

  • The National Database for Autism Research
    The National Database for Autism Research, sponsored by the U.S. National Institutes of Health (NIH), helps researchers across the country share data to "supercharge" autism research. IAN Research participants have the option of sharing the information they provide to IAN with even more researchers by participating in NDAR, too.
     
  • The Simons Simplex Collection
    The Simons Foundation is sponsoring research focused on families with only one child on the autism spectrum, known as simplex families. Nearly 2,700 families have participated, taking part in extensive in-clinic evaluations and providing DNA samples. IAN has now partnered with the Simons Foundation, and all Simons Simplex families are being invited to join IAN Research. IAN will then offer these "SSC@IAN" families the opportunity to complete special Simons Simplex follow-up questionnaires online and keep them informed about opportunities to take part in future Simons Simplex studies.
     
  • IAN Genetics
    IAN and its partners at UCLA hope to address the severe lack of genetic samples in autism research by making it easier for families to provide a DNA sample. IAN Research participants who meet the study criteria can sign a simple online form in their Family Profile, then visit a local lab to provide a blood sample.

IAN Questionnaires: The Basic Protocol and Special Questionnaires

Participants in IAN Research have the opportunity to respond to a number of online questionnaires and special surveys. Some of these are part of what we call the Basic IAN Protocol, which includes the Child with ASD Questionnaire, Mother and Father Medical History Questionnaires, and the Adult with ASD Questionnaires. From time to time, IAN also launches special questionnaires on specific topics.

Current IAN Special Questionnaires
Past IAN Special Questionnaires
Kennedy Krieger Institute A web project of Kennedy Krieger Institute Sponsored by Autism Speaks Autism Speaks