Autism Speaks Announces New Policy to Give Families Easy, Free Access to Key Research Findings
Becomes First Public Advocacy Organization Requiring Grant Recipients to Post Scientific Papers on Free PubMed Central Archive
Becomes First Public Advocacy Organization Requiring Grant Recipients to Post Scientific Papers on Free PubMed Central Archive
NEW YORK, N.Y. (November 13, 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 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.
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 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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