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NDAR Fact Sheet

The National Database for Autism Research (NDAR) is a computer system run by the National Institutes of Health (NIH) -- the principal health-oriented scientific organization of the United States, and "steward of medical and behavioral research for the Nation." 1

NDAR contains information from many NIH-funded autism studies. This allows researchers investigating autism to share information with each other. With an easier way to share, researchers hope to learn new and important things about autism more quickly than before. Now IAN families are invited to share the information they have submitted through IAN with NDAR, too.

How does NDAR make autism research go faster?

NDAR makes it possible for researchers to combine information from many studies to create bigger, more powerful data sets. Even if some of the separate studies are small, all together they may yield important findings. For example, in IAN Research many families complete a Social Responsiveness Scale (SRS), but many families participating in other autism studies have completed these, too. Through NDAR, researchers may study SRS results from dozens of different research projects all at the same time.

NDAR also makes it possible for researchers to combine a person's information across several studies. For example, researchers can use a person's MRI from one study, their developmental history from a second, and their treatment information from a third to explore questions they could not have explored otherwise. (Of course, this is only if the person gave permission for each study to share through NDAR.)

Where is my information stored if I join NDAR?

The information you have shared with IAN is stored with IAN, at the Kennedy Krieger Institute in Baltimore, Maryland. Autism researchers who wish to obtain access to deidentified data through NDAR for research purposes will have to file an application with the NIH and with the IAN Project, and will only ever see a person's unique code number, not any identifying information like name or address.

The unique code number is based on answers to a few questions, including name, gender, and birthplace, which you provide when filling in the Consent for NDAR form on IAN Research. The answers to these questions will remain at IAN. Researchers outside of IAN, including those at NDAR, will not be able to access this information. The code is encrypted, and your original identifying information cannot be derived from it.

How will I benefit from sharing my information with NDAR?

A person may not benefit directly from allowing information to be shared with NDAR. However, the information provided to NDAR may, in the future, help researchers around the world treat children and adults with autism spectrum disorders (ASDs) so that they have better outcomes.

NDAR will report to Congress and on its website about the different studies that researchers are conducting using NDAR data; however, NDAR will not be able to contact people individually about results of specific studies in which their data were used.

To learn more about NDAR, and how to participate, see "NDAR: Supercharging Autism Research."

Reference

  1. About the National Institutes of Health. (2010, October 27). Retrieved January 3, 2011, from the U.S. Department of Health & Human Services, National Institutes of Health, Web site.
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