Sage Bionetworks

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'Sandbox For Geeks' Powers Open Medical Research

Alex Woodie | Datanami | July 10, 2013

The people behind Sage Bionetworks hope that a new community-driven approach to research that features a big pool of scientific data that is open to all--or a "sandbox for geeks" as its founder put it--will result in progress being made in the battles against diseases such as arthritis, Alzheimer's, and breast cancer. Read More »

A Primer on the Open Source Movement from a Health Care Perspective

Open source, in myriad forms, has emerged as a significant development model that drives both innovation and technological dispersion. Ignore it at your peril, as did the major computer companies destroyed or totally remade by Linux and free software, or encyclopedia publishers by Wikipedia, or journalists and marketers by social media. The term "open source" was associated first with free software, but it goes far beyond software now. People around the world use open hardware, demand open government, share open data, and--yes--pursue open health. The field of health, in particular, will be transformed by open source principles in software, in research, in consultations and telemedicine, and in the various forms of data sharing all these processes call for.

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AACR Project GENIE Publicly Releases Large Cancer Genomic Data Set

Press Release | American Association for Cancer Research | January 5, 2017

The American Association for Cancer Research (AACR) today announced the first public release of cancer genomic data aggregated through its initiative known as AACR Project Genomics Evidence Neoplasia Information Exchange (GENIE). The data set includes nearly 19,000 de-identified genomic records collected from patients who were treated at eight international institutions, making it among the largest fully public cancer genomic data sets released to date...

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Apple Introduces ResearchKit, Giving Medical Researchers the Tools to Revolutionize Medical Studies

Press Release | Apple | March 9, 2015

Apple® today announced ResearchKit™, an open source software framework designed for medical and health research, helping doctors and scientists gather data more frequently and more accurately from participants using iPhone® apps. World-class research institutions have already developed apps with ResearchKit for studies on asthma, breast cancer, cardiovascular disease, diabetes and Parkinson’s disease.* Users decide if they want to participate in a study and how their data is shared. Read More »

Apple Just Hired a Guy Who Could Completely Re-Invent the Company

Kif Leswing | Business Insider | June 23, 2016

Apple is quietly building one of the strongest teams in digital health, and on Thursday, it just added perhaps its most high-profile hire yet. Stephen Friend, co-founder and President of Sage Bionetworks, is joining Apple's healthcare team, Sage Bionetworks announced on Thursday. Apple said it had “nothing more to share about his role or title." Before Sage, Friend was an executive at Merck and a faculty member at Harvard Medical School...

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Apple’s CareKit Is the Best Argument Yet for Strong Encryption

Brian Barrett | Wired | March 21, 2016

On the eve of his company’s court date with the FBI, where it will defend its right to not weaken the security of its own devices, Apple CEO Tim Cook took the stage at a small theater in Cupertino to introduce a few new devices. The message of the event’s opening, though? Encryption matters. And soon, on iOS, it will matter even more. While Cook’s remarks were brief, they were determined. “We need to decide as a nation how much power the government should have over our data, and over our privacy,” Cook said before a mixed crowd of journalists and Apple employees.

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Biden Announces Major Open Initiatives At Cancer Moonshot Summit

Press Release | The White House | June 28, 2016

Today, the Cancer Moonshot is hosting a summit at Howard University, in Washington, D.C. as part of a national day of action that also includes more than 270 events in communities across the United States.  Vice President Joe Biden will join over 350 researchers, oncologists and other care providers, data and technology experts, patients, families, and patient advocates, among others, will come together at Howard University.  They will be joined by more than 6,000 individuals at events in all 50 states, Washington, D.C., Puerto Rico, and Guam.  This is the first time a group this expansive and diverse will meet under a government charge is to double the rate of progress in our understanding, prevention, diagnosis, treatment, and care of cancer...

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Big Pharma Opens New Chapter On Big Data Collaboration

Dan Munro | Forbes.com | April 8, 2014

In the course of one short week, no less than 3 different models have emerged for sharing big data in the pharmaceutical industry.  The highest profile of these ‒ called Project Data Sphere (PDS here) ‒ was announced earlier today with the official opening of an online resource to share clinical trial data for use in cancer research.

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CEO Roundtable On Cancer Launches The Project Data Sphere Initiative, A New Data Sharing And Analytic Platform For Cancer Patient Benefit

Press Release | CEO Roundtable on Cancer , SAS, Sage Bionetworks | April 8, 2014

Project Data Sphere, LLC (PDS), an independent not-for-profit initiative of the CEO Roundtable on Cancer’s Life Sciences Consortium (LSC), announced today the launch of a new data sharing platform (www.ProjectDataSphere.org), with the goal of advancing research to improve the lives of cancer patients and their families around the world...

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CommonHealth Will Enable Android Phone Users to Access and Share their Electronic Health Record Data with Trusted Apps and Partners

Press Release | The Commons Project | September 5, 2019

Cornell Tech, UC San Francisco (UCSF), Sage Bionetworks, Open mHealth and The Commons Project are collaborating to develop CommonHealth, an open-source, non-profit public service designed to make it easy and secure for people to collect their electronic health record data and share it with health apps and partners that have demonstrated their trustworthiness. CommonHealth will leverage data interoperability standards, including HL7 FHIR to offer functionality analogous to Apple Health™ to users of Android™ phones.

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Crowdsourcing a Better Prostate Cancer Prediction Tool

Press Release | University of Colorado Anschutz Medical Campus | November 15, 2016

Knowing the likely course of cancer can influence treatment decisions. Now a new prediction model published today in Lancet Oncology offers a more accurate prognosis for a patient's metastatic castration-resistant prostate cancer. The approach was as novel as the result - while researchers commonly work in small groups, intentionally isolating their data, the current study embraces the call in Joe Biden's "Cancer Moonshot" to open their question and their data, collecting previously published clinical trial data and calling for worldwide collaboration to evaluate its predictive power...

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Evolving Patient Rights In The Research And Delivery Of Health Care

Andy Oram | Health 2.0 News | June 19, 2014

...As the idea reached the proscenium this month at the Health Datapalooza, a conference founded by the US Department of Health and Human Services and now attracting more than 2,000 people, patient empowerment marks its entry into the mainstream...

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First-Ever Crowdsourced Prostate Cancer Data-Mining Competition Discovery Impacts and Predicts Patient Survival

Press Release | Project Data Sphere, Sage Bionetworks, FIMM | November 16, 2016

Today, a breakthrough report in the international journal Lancet Oncology demonstrates how a collaborative effort to analyze broadly accessible clinical data led to novel insights and improvements in cancer treatment and management. Participants in the Prostate Cancer DREAM (Dialogue for Reverse Engineering Assessments and Methods) Challenge – an effort initiated by Project Data Sphere, LLC (PDS) in collaboration with Sage Bionetworks using proven DREAM methodology – developed new risk factor models for metastatic castration-resistant prostate cancer (mCRPC)...

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Four Things We Can Do Now to Unlock the Cure for Cancer

As a community we are capable of working together to achieve greater things. If we marshal our resources to work together, I believe we can unlock the cure for cancer. This is a rare opportunity. We need to change the models and shift our culture towards collaboration. We can’t just tweak around the edges — patients and their families can’t afford to wait. An alternative system, where all publicly-funded research and data are required to be shared would allow authors to unlock their content and data for re-use with a global audience, and co-operate towards new discoveries and analysis.

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GETy Awards Celebrate Unorthodox Open-Source Approaches to Accelerating Human Health Advances

Press Release | GET Conference | April 13, 2016

An “open-source” approach to accelerating human health advances is the common theme among a diverse group of medical science projects that have won six science awards honoring “excellence in participant-centered research” - a rapidly emerging field that aims to turn patients and healthy people into more active and more data-sharing participants in medical research. The awards will be given out at Harvard Medical School in Boston on April 25 at a scientific convening called GET Conference (“GET” stands for “Genomes, Environments, Traits”). “The winners of the GETy Awards are at the forefront of a research revolution that will radically accelerate the rate of human health advances,” says Jason Bobe, organizer of the GET Conference, and Executive Director of the nonprofit PersonalGenomes.org.