 |
Published: Jan. 17, 2006 at 5:18 PM
By DAN OLMSTED
UPI Senior Editor
The head of NBC is donating more than $2 million to a
Baltimore research institute to
do something innovative: listen and learn from the parents of children who have
autism.
Bob and Suzanne Wright's organization, Autism Speaks, is giving $2.3 million to
the Kennedy Krieger Institute to fund the first year of development of an autism
database that eventually will connect parents, educators and researchers. The
idea: Through an open, interactive process, those participating will be able to
share information, be part of ongoing studies and look for clues to causes and
treatments for autism spectrum disorders, which now affect 1 in every 166 U.S.
children.
The Wrights' involvement follows the diagnosis of a grandson with autism.
Wright, chairman and CEO of NBC Universal and vice chair of General Electric,
founded Autism Speaks (www.autismspeaks.org) with his wife last February.
A number of parents' groups already have made pioneering use of the Internet to
trade information on treatments and push for more research into the disorder, so
in a sense the Wrights are taking a page from that digital playbook. But many of
those same parents have complained that researchers tend to reject their
eyewitness experiences because they don't meet scientific standards.
What's more, the range of services that children with autism require -- from
speech therapy to behavioral approaches to special education to
medical treatment -- is often
poorly coordinated.
"I think there are only two people who know what's going on with these kids, and
those are the parents in these families," Dr. Gary Goldstein, president of
Kennedy Krieger, told Age of Autism. The institute is a leading research and
treatment center for children with developmental disorders from autism to
spinal-cord injuries.
"What we are going to do is have an engaging, interactive Web site that asks you
not only for registration information but keeps asking you -- symptoms, what
you're doing with the child, what it's costing you to do this, how hard is it to
find these services."
That will allow parents, for example, to see what other parents are doing for
sleep problems that often are part of autism. Researchers could look at the same
data to study whether some approaches seem more effective.
"There would be a matching service where you'd be asked, 'Is it OK for a
researcher to contact you by e-mail?'"
Wright's group pledged to help the effort for the next three years, with Dr.
Paul Law of the Kennedy Krieger Institute in charge of the project. Parental and
scientific advisory boards will help guide the Web site, which likely will be
launched in about a year.
"Our expectation is that, by creating a unique network of research scientists
and families, the database will become an unprecedented source of information
that will dramatically increase our knowledge and understanding of autism
spectrum disorders," Law said.
E-mail: dolmsted@upi.com
|
|