Now Viewing: Clinical research

Big News in Big Data: NIH Launches Largest and Most Diverse Genetics Database Ever Created

Feb 26, 2014, 7:21 PM, Posted by Nancy Barrand

biobank

Eighteen years ago this month, Big Data had a cultural coming out party when IBM's Deep Blue defeated international chess champion Gary Kasparov in a game. Gary Kasparov was a chess genius. But Deep Blue could mine the records of 700,000 grandmaster chess games and evaluate 200 million positions per second. The famously nimble Kasparov ultimately could not match the brute computing force of Deep Blue. 

This week we mark another historic milestone in Big Data history. This time, there is more at stake than bragging rights from a chess competition. 

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Engaging Patients in Research

Dec 3, 2013, 8:00 AM, Posted by Paul Tarini

What happens when you engage patients in research? That’s a question RWJF is exploring with grants to Sage Bionetworks and PatientsLikeMe to build online, open-source platforms that give patients the opportunity to contribute to and collaborate on research.

Sage Bionetworks’ BRIDGE platform will allow patients to share and track their health data and collaborate on research into diseases and health problems that matter most to them. Three research projects will be piloted on BRIDGE in the coming year, focusing on diabetes, Fanconi anemia and sleeping disorders.

PatientsLikeMe’s Open Research Exchange (ORE) will give researchers and patients a space to work together to develop health outcome measures that better reflect outcomes that are meaningful to patients. After several months building the ORE, PatientsLikeMe is now in testing mode, putting the platform through its paces. But it’s not just an academic exercise. PatientsLikeMe has recruited four researchers to pilot the ORE. These researchers will be providing feedback on the site while working with patients in the PatientsLikeMe network to develop and test an initial set of health outcome measures.

Sage Bionetwork’s Stephen Friend discusses collaboration between patients and researchers

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A Dispatch from the Cutting Edge of Placebo Studies

Jul 9, 2013, 8:00 AM, Posted by Brian C. Quinn

Courtesy of The Program in Placebo Studies and the Therapeutic Encounter (PiPS) Courtesy of The Program in Placebo Studies and the Therapeutic Encounter (PiPS)

It’s a rare and exciting opportunity to witness a new field of research blossom. Although working on the cutting edge is thrilling for those researchers who operate there, day in and day out—it’s also scary. Every step they take leads them into more uncharted territory.

I recently attended the first of five public forums on the science of placebos, hosted by Pioneer grantee the Program in Placebo Studies and the Therapeutic Encounter (PiPS). This forum series, co-sponsored by the Pioneer Portfolio, offers rare public access to the small but burgeoning field of placebo studies.

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PatientsLikeMe Project Pioneers Use of Outcomes Data That Are Meaningful To Patients

Feb 25, 2013, 12:33 PM, Posted by Pioneer Blog Team

Jamie Heywood Jamie Heywood
Paul Tarini Paul Tarini

RWJF has awarded PatientsLikeMe a $1.9 million grant to create the world’s first open-participation research platform to develop patient-centered health outcomes. The new platform will be linked with the PatientsLikeMe network to help researchers develop health outcome measures that better reflect patients’ experiences with a disease, and assess health and quality of life in ways that matter to patients.

Jamie Heywood, co-founder of PatientsLikeMe, and Paul Tarini, senior program officer of the Pioneer Team at RWJF, share their views on why creating an open-access platform to develop measures that matter to patients could advance meaningful treatments that improve health and advance research.

Why is this a pioneering project?  What makes it novel? 

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Pioneer Grantees Present Game-Changing Ideas at 12gurus: Health Conference

Apr 12, 2012, 2:02 AM, Posted by Pioneer Blog Team

Last month’s 12gurus: Health conference brought “resources and innovation to the forefront” by convening the world’s most accomplished leaders in health care and medicine to share new ideas that can improve the health care system. The conference focused on how to enable innovation through research, data-sharing, and mobile technology to pave the way for future breakthroughs in health care.

Three former and current Pioneer grantees attended the invitation-only conference in New York City and gave 18-minute-or-less “TED.com-style” talks:

  • Scott Johnson, president and founder of the Myelin Repair Foundation, presented the session, “Breaking from the Past to Breakthrough to Cures-Accelerated Collaboration Model.” Learn more about Scott’s recent honor as the recipient of the prestigious Gordon and Llura Gund Leadership Award from Research!America.

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