Autism Speaks Announces Public Access Policy

[Rick Johnson <rick@arl.org>]

Of possible interest to readers of this list...

AUTISM SPEAKS ANNOUNCES NEW POLICY TO GIVE FAMILIES EASY, FREE 
ACCESS TO KEY RESEARCH FINDINGS

Becomes First U.S. Public Advocacy Organization Requiring Grant
Recipients to Post Scientific Papers on Free PubMed Central Archive

NEW YORK, N.Y. (November 12, 2008) - Autism Speaks, the nation's 
largest autism advocacy organization, today announced that 
effective December 3, 2008, all researchers who receive an Autism 
Speaks grant will be required to deposit any resulting 
peer-reviewed research papers in the PubMed Central online 
archive, which will make the articles available to the public 
within 12 months of journal publication. This new policy will 
make the results of Autism Speaks funded research easily 
accessible - at no charge - to individuals with autism, families 
and other advocates, as well as interested researchers. Autism 
Speaks is the first U.S.-based non-profit advocacy organization 
to institute this public access requirement.

Posting articles on PubMed Central not only makes the results of 
research more accessible, it also integrates them with other 
research and data, making it easier for scientists worldwide to 
pursue autism research and make discoveries. Equally important, 
families, clinicians, patients, educators, and students reap the 
benefits by having open access to Autism Speaks-funded research. 
PubMed Central's trusted repository of full-text biomedical 
journal articles is freely available online at 
http://www.pubmedcentral.gov.

While families are now able to view a wide range of information 
about autism research online, they often do not have easy access 
to primary sources, including peer-reviewed scientific 
literature. This new policy will allow everyone to access 
complete articles that in the past may have been available only 
through fee-based journals.

"Families with autism are, by nature, motivated advocates 
constantly seeking new and reliable information to educate 
themselves," said Sophia Colamarino, Ph.D., Autism Speaks Vice 
President of Research. "They are also particularly sophisticated 
in their ability to read and interpret scientific literature 
pertaining to autism. This is an effort to give those families 
and their physicians access to important information about the 
latest developments in autism research."

"With each additional paper added to PubMed Central, the 
archive's value grows, and the peer-reviewed scientific 
literature becomes more open and better integrated with other 
data resources," said David J. Lipman, M.D., director of the 
National Center for Biotechnology Information, the National 
Library of Medicine division that maintains the archive. "I'm 
pleased that Autism Speaks approached us. I know their public 
access program will be good for research, and for patients and 
their families."

"With this groundbreaking step, Autism Speaks is demonstrating 
great vision and leadership,"said Heather Joseph, executive 
director of SPARC (Scholarly Publishing and Academic Resources 
Coalition) and a leader of the movement for open access to 
research findings. "By taking advantage of the opportunity for 
open information sharing on the Internet, they will both 
accelerate the pace of research and address the public's need to 
better understand autism. We hope other research funders will 
emulate this powerful example."

About Autism

Autism is a complex brain disorder that inhibits a person's 
ability to communicate and develop social relationships, and is 
often accompanied by behavioral challenges. Autism spectrum 
disorders are diagnosed in one in 150 children in the United 
States, affecting four times as many boys as girls. The 
prevalence of autism has increased tenfold in the last decade. 
The Centers for Disease Control and Prevention have called autism 
a national public health crisis whose cause and cure remain 
unknown.

About Autism Speaks

Autism Speaks is dedicated to increasing awareness of autism 
spectrum disorders, to funding research into the causes, 
prevention and treatments for autism, and to advocating for the 
needs of individuals with autism and their families. It was 
founded in February 2005 by Suzanne and Bob Wright, the 
grandparents of a child with autism.  Bob Wright is Senior 
Advisor at Lee Equity Partners and served as vice chairman, 
General Electric, and chief executive officer of NBC and NBC 
Universal for more than twenty years. Autism Speaks merged with 
both the National Alliance for Autism Research (NAAR) and Cure 
Autism Now (CAN), bringing together the nation's three leading 
autism advocacy organizations. To learn more about Autism Speaks, 
please visit www.autismspeaks.org

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