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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."


Contact: Jennifer McLennan

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