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The National Database for Autism Research, or NDAR, was created as part
of the federal response to address the needs of scientists studying autism.
The goal of NDAR is to make available to scientists all of the human autism data
now being collected, ranging from molecules to genes to behavioral,
social, and environmental interactions.
These data are being collected not only at NIH but also at private
organizations and international research efforts being conducted around the globe.
Together they will provide far more research data than any one lab could collect on its own.
Such an attempt requires the active involvement of the research community
but especially those individuals and families consenting for their information
to be shared with many scientists. Dr. Paul Law serves as director of the
Interactive Autism Network.
He's also a parent of an autistic child and sees the value and reach of NDAR.
As a research participant myself, I'm thrilled that NDAR exists and that when
I participate in a research project
that data is being taken to a central place
and well cared for and connected with all of the other projects I've
participated in
in a way that researchers can make the most use of it
in improving
the quality of life for my son and for my family.
It is important for potential research participants to know
that while their data may be shared through NDAR, their identities are not.
Before any data are shared all information that could be used to
identify a research participant is removed.
Qualified researchers who want to study autism can ask to see the
information in NDAR and all requests are carefully reviewed by a committee of
experts in protecting scientific information.
As a parent of an autistic child and a member of the NDAR team, Gretchen
Navidi understands the need to pool data.
I think that a single person
participating in any kind of research isn't going to be able to provide enough
information for researchers to answer any of the questions that they're asking.
But when you start with one person and then you add another person and you keep
going
you end up with a large enough group of people. And I think it's really important
for other family members to participate because there's so much that can be
learned
about autism
from comparing affected and non-affected individuals, especially within a family.
To learn more about the National Database for Autism Research
and how your participation is helping accelerate scientific discovery
visit the NDAR website at
ndar.nih.gov.