In 2008, PPMD joined the Genetic Alliance and others in the rare disease community, in support of “open access” – essentially ensuring that all NIH funded researchers make available to the public published peer-reviewed manuscripts and articles on a searchable website like PubMed Central or the National Library of Medicines. Making them freely accessible to the public within 12 months of publication.
President Obama signed the 2009 Consolidated Appropriations Act into law on March 11, 2009. The bill included a provision making the National Institutes of Health (NIH) Public Access Policy permanent.
This was an important step for communities like ours, where science was rapidly evolving, money invested in Duchenne increasing, and more publications being published explaining what the research community was learning occurring.
The NIH reported last fall that it would start to crackdown on enforcing open access in the Spring 2013.
We are thrilled to see the mandate starting to have a large impact, as the NIH reports a huge increase in the number of approved manuscripts this year!