Shire hopes to further rare disease research by requiring studies funded by the biopharmaceutical company to be published in open-access journals. The policy – which will help provide other researchers along with members of the public with unrestricted access to Shire’s research – officially went into effect at the start of year.
“Shire’s new open access policy builds on our commitment to transparency and reflects our dedication to helping patients by allowing everyone to freely access and learn from our research findings,” said Christopher Rains, Head, Global Medical Affairs – Medical Shared Services at Shire. “We believe it’s imperative to pioneer a new standard of access to publications that can encourage collaboration and drive medical innovation, with a goal of helping to bring innovative treatments to patients more rapidly. This may be particularly important when it comes to advancing new therapies for treating rare diseases.”
Rare disease research is a particularly difficult area of study because of the vast gaps in knowledge about these conditions, and the often-small patient populations available for trials. According to Shire, about 7,000 rare diseases have been identified, but few have approved treatments available.
“I believe Shire is the first biotechnology company to mandate that its research be published under an open access model. This approach helps to ensure that research findings can be can be built on by the widest possible audience in a manner that maximises health and public benefit,” said Robert Kiley, Head of Open Research at the Wellcome Trust, a charitable foundation that supports scientific research.
In their presentation at the recent 2018 European Meeting of International Society for Medical Publication Professionals (ISMPP), Kiley and Rains pointed out that 60 percent of medical research studies are funded by pharmaceutical companies, yet most of the results are kept private. In contrast, Shire claims to be the only company that reports results from every one of its clinical trials on the US government-run trial registry, ClinicalTrials.gov.
Shire’s new publication policy includes studies of all stages of clinical development, including preclinical, clinical and postmarketing. The company is also reportedly exploring the option of making its historical backlog of publications free to access.
The company’s new policy could signal a shift away from the traditionally tight-lipped pharmaceutical industry to a more collaborative drug development process. Academic research may also be trending towards more open-access research, with a group of University of Toronto-affiliated scientists announcing their plans to openly publish lab notes in real time.