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NDAR: Supercharging Autism Research

Date Last Revised: 
June 6, 2012
Date Published: 
January 6, 2011

The Interactive Autism Network (IAN) is partnering with the National Institutes of Health (NIH) to accelerate autism research like never before. How? Through the National Database for Autism Research, or NDAR.

A Far-Reaching Collaboration

The NIH is the principal health-oriented scientific organization of the United States, and "steward of medical and behavioral research for the Nation." 1  IAN is the largest online autism research project in the U.S., with thousands of families participating. Now the NIH would like to build on IAN's success by inviting IAN families to participate in the National Database for Autism Research (NDAR).

What is NDAR? It is a computer system run by the NIH that allows researchers studying 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. This is similar to what IAN already does, but on an even larger and more ambitious scale.

View the video that follows to learn about NDAR.

Creating "Synergy"

Synergy is defined as "the interaction of two or more agents or forces so that their combined effect is greater than the sum of their individual effects." 2 This is exactly what NDAR hopes to do: create synergy between all the diverse autism research projects out there, including IAN, by supercharging autism research in two ways.

First of all, NDAR will make 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) for their child on the autism spectrum, 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.

Second, NDAR 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, his or her developmental history from a second, and his or her 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.)

Privacy Protected

Researchers who apply to access data through NDAR do not gain access to a family's identifying information, like name or address. This is because each person participating in NDAR-associated research is assigned a unique code number based on answers to a few basic questions such as name, gender, and birthplace. It is by using this code number that a person's information can be linked across several studies without researchers knowing his or her identity. The code is encrypted, and a person's original identifying information cannot be derived from it.

How IAN Families Can Participate in NDAR

It's very easy for a family participating in the IAN Research project to participate in NDAR, too. (IAN families don't have to participate in NDAR, by the way, but it is a way to make the time and energy spent answering IAN's online surveys yield even more autism research findings.)

If you are participating in IAN and who would like to share information with NDAR, too:

  • Log on to IAN Research.
  • Find the Consent for NDAR listed under your name in the IAN Family Profile.
  • Follow the instructions. If you decide to participate in NDAR, click on YES to provide your electronic consent, and answer the few questions that follow.
  • Repeat for each family member listed in your IAN Family Profile.

If you're not participating in the IAN Research project, but are eligible and would like to, you can register here. All participants in IAN Research will be given the opportunity to participate in NDAR, too.

For more about NDAR, see the NDAR Fact Sheet.

If you have any questions, please contact the IAN Research team at 866-348-3440 or ian@kennedykrieger.org. We are here to help.

References

  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.
  2. synergy. (n.d.). The American Heritage® Stedman's Medical Dictionary. Retrieved January 3, 2011, from Dictionary.com Web site.
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