Sage Bionetworks

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Health Data Should Belong to Patients, Topol Argues

Angela Woodall | MedCity News | July 21, 2016

The digital revolution’s merging of medicine with high tech has unleashed massive amounts of data about the most intimate details of our life — what we ate, how far we walked, how fast our heart beat. As a result, what constitutes health data is no longer so easily defined. Neither is how the information is used. With rise of machine learning, those questions are becoming increasingly urgent, especially with the move of high tech companies into the clinical sphere, according to health data transparency advocate Dr. Eric Topol...

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Healthcare Lessons from the Data Sages at Strata

Most healthcare clinicians don't often think about donating or sharing data. Yet, after hearing Stephen Friend of Sage Bionetworks talk about involving citizens and patients in the field of genetic research at StrataRx 2012, I was curious to learn more...With this in mind, I arrived at this February's Strata conference wondering what I could extrapolate from other more sophisticated data users to healthcare.

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John Wilbanks to Keynote OpenClinica 2015 Conference (OC15)

Press Release | OpenClinica | April 1, 2015


Noted advocate of open access in clinical research and Chief Commons Officer at Sage Bionetworks, John Wilbanks, will deliver the keynote presentation at the 2015 OpenClinica Global Conference (OC15), to be held May 31 - June 1 in Amsterdam. OpenClinica is the largest open source community in the clinical research field, and OC15 will bring together both clinical research and IT professionals to share cutting-edge information and ideas around how open source is being used to transform the clinical research landscape.

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Leader in Clinical Research Tech Reacts to Apple's #ResearchKit

Apple, Inc. has a remarkable ability to capture the world’s attention when announcing “the next big thing.” They have honed their well-known Reality Distortion Field skills for over 30 years...ResearchKit has grabbed such attention. Maybe not as much as The Watch, but amongst the minority of us who pay attention to such things. And the reactions have been typically polarized—it’s either an “ethics quagmire” or “Apple fixing the world.” But reality rarely presents an either-or proposition...

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New Patient-Focused Commitments to Advance the President’s Precision Medicine Initiative

Press Release | The White House | July 8, 2015

Today, marking six months of progress to advance [Precision Medicine Initiative] PMI, the White House is hosting a Champions of Change event honoring extraordinary individuals from across the country who are making a difference in the lives of patients and driving precision medicine forward. In addition to celebrating these Champions, Federal agencies and private-sector groups are stepping up to the President’s call to action to advance the PMI by making important commitments to... Read More »

Open Source in the Worldwide COVID-19 Response

February marks the celebration of creation of the Open Source Initiative (OSI) in 1998. OSI created the standard definition of the term Open Source that helped guide many of LPI's initiatives today. Through the past year, open source provided many opportunities to organizations to continue to work, implement their projects, and continue reaching out to communities. Here are just a few examples of how open source provides opportunities through the face of COVID-19. The COVID-19 crisis brought out all the creativity of the open source movement. In every area of innovation--open source software, open data, open collaboration, and even open equipment--companies and research institutes have addressed medical and public health needs quickly. This article highlights some of the initiatives in each area.

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Pharma, Data Veteran Stephen Friend Bites At Apple’s Health Offer

Alex Lash | Xconomy | June 23, 2016

Consumer tech giant Apple, which has spent considerable effort positioning its products as health and fitness helpers, has just hired someone who knows Big Pharma and Big Data. Stephen Friend, a veteran of drug R&D and, more recently, a nonprofit effort to foster more collaborative biomedical research and more data sharing, is joining Apple in an unspecified capacity. The news emerged today from Sage Bionetworks, the Seattle nonprofit that Friend founded after leaving drug giant Merck, where he was a senior research executive for eight years...

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Pharmaceutical and Biomedical Research using Agile Software

Andy Oram | EMR & EHR | January 18, 2016

Medical research should not be in a crisis. More people than ever before want its products, and have the money to pay for them. More people than ever want to work in the field as well, and they’re uncannily brilliant and creative. It should be a golden era. So the myriad of problems faced by this industry–sources of revenue slipping away from pharma companies, a shift of investment away from cutting-edge biomedical firms, prices of new drugs going through the roof–must lie with the development processes used in the industry...

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Research Symbiosis Makes Mathematical Crystal Ball to Gaze into Future of Prostate Cancer Treatment

Press Release | University of Colorado Cancer Center | August 4, 2017

The chemotherapy docetaxel is widely accepted as a standard therapy for metastatic castration-resistant prostate cancer. But 10-20 percent of patients will have adverse side effects that force discontinuation of treatment. These patients may have been better off with another treatment in the first place, but who’s to know before trying the drug which patients will go on to experience debilitating side effects? A crowdsourced competition asked this as an open question. Today in the Journal of Clinical Oncology Clinical Cancer Informatics, competition organizers and participating teams report their findings...

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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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Sage Bionetworks to Share Results of Mobile Health Research Study at Upcoming Precision Medicine Conference

Press Release | Sage Bionetworks | June 29, 2016

In the midst of several colliding perspectives on personal data sharing from both patients and researchers, it is challenging to comprehend how clinical study designs should be conducted to benefit both stakeholders. Sage Bionetworks recently began sharing data from over 9,000 participants of mPower, a mobile health research study for Parkinson's Disease. As one of the first observational assessments of human health to achieve this scale, its success is attributed to the unique study design which emphasizes transparency and trust between participants and researchers...

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Team Taps The Wisdom Of The Crowd To Impact Breast Cancer Prognosis

Staff Writer | Medical Press | April 17, 2013

Two new reports issuing in Science Translational Medicine (STM) today showcase the potential of teams of scientists working together to solve increasingly complex medical problems. The results demonstrate that better predictors of breast cancer progression than those currently available can be rapidly evolved by running open Big Data Challenges [...]. Read More »

Timeline: How Apple Is Piecing Together its Secret Healthcare Plan

Bill Siwicki | Healthcare IT News | June 23, 2017

Rumors are at a fever pitch that Apple has big plans for healthcare, including putting a medical record on the iPhone, possibly acquiring its way into the EHR market. From its leap into healthcare in 2014 with its HealthKit application programming interface in September 2014 to the June 19 revelation of Apple’s work with the tiny start-up Health Gorilla, Apple has made a series of moves in healthcare that clearly indicate the company has plans for the space that will somehow manifest on its mega-popular iPhone and iPad products. Here’s a look at how Apple got to where it is today in healthcare...

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Transitioning To Open Systems In Drug Discovery

John Wilbanks | FasterCures | October 18, 2013

Bringing the ideas of “open source” into the pharmaceutical process is far from simple. It requires a careful understanding both of the realities of open source as a software development process well as the realities of therapy research, development, and regulatory approval. Read More »