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Free the Data announces new partnership with Rep. Debbie Wasserman Schultz

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WASHINGTON, DC. Posted: October 8, 2014, Free-the-Data.org Congresswoman continues her dedication to advancing medical research and improving care for hereditary breast and ovarian cancer Free the Data, a national coalition of organizations dedicated to freeing genetic information, today announced that U.S. Rep. Debbie Wasserman Schultz (FL-23) has been named its Honorary Chair. “The time for … Continue reading Free the Data announces new partnership with Rep. Debbie Wasserman Schultz

Mini-Sentinel Assessments

September 22, 2014 Mini-Sentinel is a pilot project sponsored by the U.S. Food and Drug Administration (FDA) to create an active surveillance system – the Sentinel System – to monitor the safety of FDA-regulated medical products. Most Mini-Sentinel activities focus on assessments, methods, or data. Visit the following links to learn more about each type … Continue reading Mini-Sentinel Assessments

FDA releases action plan to encourage greater patient diversification in trials

The FDA has released an action plan aimed at encouraging more diverse patient participation in drug and medical device clinical trials.

The plan, released last month, lays out priorities for increasing both trial participation and the reporting of patient demographic data. It follows an August 2013 report to Congress on these concerns.
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In the News: 5 Q’s for Sarah Greene, Senior Program Officer at PCORI

Published on September 2, 2014 | by Daniel Castro, Center for Data Innovation The Center for Data Innovation spoke with Sarah Greene, a senior program officer at the Patient-Centered Outcomes Research Institute (PCORI), a non-profit organization authorized by Congress to fund and disseminate research that will help patients and caregivers make more informed decisions. Greene … Continue reading In the News: 5 Q’s for Sarah Greene, Senior Program Officer at PCORI

In the News: For Big-Data Scientists, ‘Janitor Work’ Is Key Hurdle to Insights

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Technology revolutions come in measured, sometimes foot-dragging steps. The lab science and marketing enthusiasm tend to underestimate the bottlenecks to progress that must be overcome with hard work and practical engineering.
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In the News: US big-data health network launches aspirin study

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PCORI clinical-research initiative will collect information on some 30 million people. Sara Reardon, Nature.com; 06 August 2014 One of the largest big-data experiments in health care has set its first research target. The leaders of the Patient-Centered Outcomes Research Institute (PCORI) in Washington DC voted on 29 July to focus the institute’s first clinical trial … Continue reading In the News: US big-data health network launches aspirin study

Announcement: New IOM Brief on PCORnet and the Learning Health System

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An April 2014 workshop co-produced the PCORI and the Institute of Medicine (IOM) engaged health system leaders in a discussion of the issues, challenges, and approaches that present the greatest opportunity for executive engagement in leadership of efforts to generate new knowledge in the routine delivery of medical care as part of a continuously learning … Continue reading Announcement: New IOM Brief on PCORnet and the Learning Health System

In the News: Changing the Face of Sleep Apnea

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Sleep Review; posted May 14, 2014 MyApnea.org, an ambitious new online network backed by a million dollar grant, will have 50,000 members within the next 18 months. Powered by patients, this site has the potential to change how patients, professionals, and the public understand obstructive sleep apnea. MyApnea.org [or Sleep Apnea Patient Centered Outcomes Network … Continue reading In the News: Changing the Face of Sleep Apnea

In the News: PCORI in the Literature (JAMIA Special Issue)

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JAMIA Issue Features PCORnet: May 2014, Volume 21, Issue 3 A special collection of papers in the Journal of the American Medical Informatics Association explores PCORnet, the National Patient-Centered Clinical Research Network initiative. This special set of articles includes an editorial by National Institutes of Health Director Francis Collins, MD, PhD, an overview of PCORnet’s … Continue reading In the News: PCORI in the Literature (JAMIA Special Issue)

In the News: The Promise and Perils of a New Project to Share Individual Patient Records

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Posted April 17, 2014; The Diane Rehm Show, NPR The Promise and Perils of a New Project to Share Individual Patient Records In a new effort to improve medical care, a group of hospitals, clinics and insurers is pooling patient data. We discuss the promise and perils of sharing individual patient records.  One panelist is Dr. … Continue reading In the News: The Promise and Perils of a New Project to Share Individual Patient Records