Foundation launches open access platform for blood cancer research data : Open Access Now

"On Tuesday, the Multiple Myeloma Research Foundation (MMRF) announced the launch of the MMRF Researcher Gateway, a new portal that will provide open access to genetic and research data in hopes of speeding up the development of new treatments for the blood cancer. In an interview with MSNBC’s Morning Joe, MMRF Founder and CEO Kathy Giusti was asked, 'How much do you think that [the sharing of data] will fast foward towards cures? And why hasn’t there been a sharing of data? It seems so simple.' Giusti’s answered with the following: 'It’s frustrating because it’s where the system is broken. People are not bad, it’s just that the system doesn’t work very well. When you look at academic centers and the best scientists in the country, the way they move ahead is publish or perish. You want to be the first to find your own invention and you want to put it out to the public domain at that point. That’s not fast sharing. What you have to do is make sure everyone is willing to give up intellectual property so all scientists can look at it. That’s the key.'  The MMRF Researcher Gateway will be powered by the MMRF CoMMpass Study, which lauched in 2011 and follows 1,000 patients from initial diagnosis through their course of treatment over a minimum of five years. The study has 50 centers in the United States and Europe that are enrolling patients and will be sharing data. All participating patients have agreed to share their genetic information and treatment responses ..."