open research

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Open Science Prize Goes to Software Tool for Tracking Viral Outbreaks

Press Release | Fred Hutch | February 28, 2017

“Everyone is doing sequencing, but most people aren’t able to analyze their sequences as well or as quickly as they might want to,” Bedford said. “We’re trying to fill in this gap so that the World Health Organization or the U.S. Centers for Disease Control and Prevention — or whoever — can have better analysis tools to do what they do. We’re hoping that will get our software in the hands of a lot of people”...

Open, Free Access to Academic Research? This Will Be a Seismic Shift

David Willetts | The Guardian | May 1, 2012

Opening up access to academic research will put more data and power in the hands of the people who pay for it. Read More »

Pistoia Alliance Launches New Chemical Safety Library Project

Press Release | Pistoia Alliance | November 10, 2015

The Pistoia Alliance...has started work on the Chemical Safety Library, a project which will allow for the capture and sharing of previously inaccessible reaction incident information to enhance laboratory safety...The Chemical Safety Library will see the creation of an informatics driven resource to allow all organizations to effectively share chemistry-related incident reports, delivering value from real life incidents and learnings. The data will be collected in a publicly available central resource and rule sets and triggers will be created that can be tied to scientists’ reaction planning tools, so that if an organization should attempt to repeat a procedure that previously resulted in an accident, a warning will be issued.

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Sage Bionetworks Advocates for Open Systems in Health Research

Press Release | Sage Bionetworks, mPower | July 20, 2016

Sage Bionetworks, a nonprofit biomedical research organization, continues its work to redefine the way in which health data is gathered, shared and used through the use of open systems, incentives and norms. In a Nature commentary published today, a set of governing principles for digital health data analysis that are designed to maximize the contribution of large-scale digital data to advancing medical care are described. This commentary was co-authored by John Wilbanks, Chief Commons Officer at Sage Bionetworks and Eric Topol, MD, Director of the Scripps Translational Science Institute, and Chief Academic Officer of Scripps Health. The two work together on the NIH-funded Precision Medicine Initiative that was announced earlier this month.

Sage Bionetworks Releases First-of-its-Kind Data from Parkinson’s iPhone Study

Press Release | Sage Bionetworks, mPower | March 3, 2016

Sage Bionetworks, a nonprofit biomedical research organization, today released an unparalleled dataset that captures the everyday experiences of more than 9,500 people to help speed scientific progress toward treatments for people with Parkinson’s disease. The dataset, which consists of millions of data points collected on a nearly-continuous basis through the iPhone app mPower, will provide researchers with unprecedented insight into the daily changes in symptoms and effects of medication for people with Parkinson’s.

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We Can Work It Out: Collaboration Leads To Insights, New Targets In Epilepsy

Ron Leuty | Business Times | August 13, 2013

A little scientific cooperation goes a long way. Epilepsy researchers, who more than a decade ago forged a national collaboration, have discovered 25 new mutations around the neurological disorder. What’s more, they also uncovered two genes behind rare childhood forms of the disease... Read More »

Yes, You Can Reconcile The Wide Sharing Of Personal Medical Research Data With Greater Participant Control

Glynn Moody | TechDirt | March 15, 2016

Although the benefits of sharing big datasets are well-known, so are the privacy issues that can arise as a result. The tension between a desire to share information widely and the need to respect the wishes of those to whom it refers is probably most acute in the medical world. Although the hope is that aggregating health data on a large scale can provide new insights into diseases and their treatments, doing so makes issues of consent even trickier to deal with. A new study of Parkinson's disease from Sage Bionetworks, which describes itself as a "non-profit biomedical research organization," takes a particularly interesting approach. Unusually, it used an iPhone app to gather data directly from the participants...

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