$2.26 Million Award Funds Autism database Project

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http://www.kennedykrieger.org/kki_news.jsp?pid=4921

Initial $2.26 Million Award Funds Project That Will Serve as a Unique

Resource

for Families and Researchers

NEW YORK, Jan. 17 / -- Autism Speaks, a non-profit organization

dedicated to increasing awareness about the growing autism health crisis and

raising funds for critical autism research, today announced that its

board of

directors has voted to fund a program for the development of a national

autism

database. Kennedy Krieger Institute, one of the nation's leading treatment

centers for autism and other developmental disorders, will develop the open,

interactive database. Autism Speaks is making an initial three-year

commitment to the project, beginning with an award of $2,266,000 for the

first

year. This is the first award of over a million dollars given out by Autism

Speaks, which was founded in February 2005.

" The funding of this program is an important first step in Autism

Speaks'

efforts to advance innovative autism research, " said Mark Roithmayr,

president

of Autism Speaks. " The database project has the potential to create a

powerful tool for thousands of families, educators and researchers

across the

country and around the world. "

The national online autism database will serve as a shared resource to

centralize registration of families and individuals with autism spectrum

disorders and connect them with researchers, parents and other individuals

with autism throughout the country and the world. In addition to supporting

scientific investigation, it will provide individuals and families

affected by

autism with unprecedented information about the experiences of others and

serve as an open resource for educators and policy makers. A longitudinal

database will enable families and individuals to participate in an online

study aimed at understanding the patterns of treatment use and responses to

those treatments. Online community features including internal message

boards,

researcher chat sessions, member profiles, a calendar, and links to outside

autism resources are also planned. The fostering of communication between

families and the research community will not only lead to research of the

highest quality, but also invite parents to have direct input regarding the

scientific and policy questions to be investigated.

Dr. Law of the Kennedy Krieger Institute will oversee the

development

of the resource. According to Law, parental and scientific advisory boards

will have continual influence on the project so that both parent and

research

interests are constantly considered. The data collection and management

processes will be designed with careful attention to confidentiality and

medical ethics, added Law.

" 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, " said Dr. Law.

Today, one in 166 individuals is diagnosed with an autism spectrum

disorder. It occurs in all racial, ethnic, and social groups and is four

times

more likely to strike boys than girls. Autism impairs a person's ability to

communicate and relate to others.