Patient advocacy groups turn to open-access publishing to advance research quest

1 view
Skip to first unread message

Jennifer McLennan

unread,
Oct 24, 2011, 1:01:37 PM10/24/11
to sparc...@arl.org, ata-...@arl.org, SPARC Open Access Forum, SPARC-EUR...@jiscmail.ac.uk, spar...@arl.org, Jennifer McLennan
ALLIANCE FOR TAXPAYER ACCESS
For Immediate Release
October 24, 2011

For more information, contact:
Jennifer McLennan
jennifer [at] arl [dot] org
(202) 296-2296 ext 121

Patient advocacy groups turn to open-access publishing to advance research quest

Washington, D.C. – Pat Furlong founded Parent Project Muscular Dystrophy (PPMD) in 1995 to link families, like hers, who had been affected by muscular dystrophy with both resources and hope. Now, Furlong has blazed a new trail in the fight to end the disease. She has spearheaded a partnership between PPMD and the Public Library of Science (PLoS) to launch an open-access publication, PLoS Currents: Muscular Dystrophy, this month. The story of the partnership is told in a new article released today by the Alliance for Taxpayer Access.

PLoS Currents: Muscular Dystrophy is a new forum that will promote the rapid exchange of information, hypotheses and experimental results related to the rare disease. Compared to a traditional journal, the PLoS Currents publication process is compressed.

“The idea to make it very streamlined, quick, and hassle-free,” says Mark Patterson, director of publishing for PLoS. “This publication does all the essential jobs of a journal – including peer review and archiving – but it has the potential to do that very fast and, also, much more cheaply.”

For families, the new online journal will give them access to the latest information to help them make the most informed choices in treatment for their children, says Furlong, whose two sons died from Duchenne Muscular Dystrophy as teenagers. The project will also link scientists and, hopefully, lead to new advances. “I think we waste too much time, effort and money not learning from studies that didn’t produce positive results,” says Furlong. “I think this really will help the community and our goal for Duchenne is to accelerate wherever and whenever we can. We felt PLoS offered significant opportunity to accelerate.”

Furlong thinks other patient advocacy groups will likely follow the lead of PPMD and look to online journals to exchange information more quickly.

"Pat was quick to grasp the possibilities that an outlet like PLoS Currents presents to share all kinds of credible research results more quickly than ever," said Heather Joseph, Executive Director of SPARC and Spokesperson for the Alliance. "The ability to give a targeted community of researchers fast access to the combination of articles, data, and even negative results presents important new opportunities to make new connections and speed the pace of discovery."

The full article is available online from the Alliance for Taxpayer Access at http://www.taxpayeraccess.org.


###

The Alliance for Taxpayer Access is a coalition of advocacy, academic, research, and publishing organizations that supports open public access to the results of federally funded research. The Alliance was formed in 2004 to urge that peer-reviewed articles stemming from taxpayer-funded research become fully accessible and available online at no extra cost to the American public. Details on the ATA may be found at http://www.taxpayeraccess.org.

-------------------------------------
Jennifer McLennan
Director of Programs & Operations
SPARC
jenn...@arl.org
(202) 296-2296 x121
Fax: (202) 872-0884
http://www.linkedin.com/in/jennifermclennan
http://www.arl.org/sparc
--------------------------------------
Open Access Week 2011
October 24 - 30
http://www.openaccessweek.org
--------------------------------------
The SPARC Open Access Meeting
March 11 - 13, 2012
Kansas City
http://www.arl.org/sparc/media/11-0726.shtml

Reply all
Reply to author
Forward
0 new messages