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PCORnet’s Richesson Elected Fellow of ACMI

Rachel L. Richesson, PhD, with the PCORnet Rare Disease task force and the NIH Collaboratory Phenotype Core lead, has been elected a Fellow of the American College of Medical Informatics (ACMI), one of 19 people given this honor in 2014. ACMI is a college of elected Fellows from the U.S. and abroad who have made … Continue reading PCORnet’s Richesson Elected Fellow of ACMI

In the News: ClinicalTrials.gov: An Underutilized Source of Research Data

Therapeutic Innovation and Regulatory Science, DIA ClinicalTrials.gov: An Underutilized Source of Research Data About the Design and Conduct of Commercial Clinical Trials Abstract Since 2007, the US federal government has required that organizations sponsoring clinical trials with a least one site in the United States submit information on these clinical trials to an existing database: … Continue reading In the News: ClinicalTrials.gov: An Underutilized Source of Research Data

Resource Center Office Hours: January 12 – David Cella

Web Conference Meeting Info: Monday, January 12, 2015 Time: 2:00-3:00 pm, Eastern Standard Time David Cella, from PROMIS, will present during this session, answer questions related to PCORnet activities,  and discuss opportunities for collaboration. Meeting Number: 739 129 699 Meeting Password: 1234 —- To join the online meeting —— 1. Go to https://dukemed.webex.com/dukemed/j.php?MTID=m676cb7aeb20da7b36d8668b36dcd713a 2. If … Continue reading Resource Center Office Hours: January 12 – David Cella

Real World Evidence and Health Innovation workshop – December 11

PCORI Executive Director Joe Selby, MD, MPH, and Richard Platt, MD, co-Principal Investigator of the PCORnet Coordinating Center, will explore the drivers and barriers to good use of health data at the Network for Excellence in Health Innovation’s (NEHI) Dec. 11 workshop, “Real World Evidence and Health Innovation.” Visit the event page for more details … Continue reading Real World Evidence and Health Innovation workshop – December 11

Resource Center Office Hours: December 1 – Lia Hotchkiss and Aingyea C. Kellom

Web Conference Meeting Info: Monday, December 1, 2014 Time: 11:00 am-12:00 pm, Eastern Standard Time PCORI’s Engagement Awards Program: Integrating patients & stakeholders into the healthcare research process – across the continuum from topic generation to dissemination and implementation of research results! Lia Hotchkiss, MPH Director, Eugene Washington PCORI Engagement Awards Program Patient-Centered Outcomes Research Institute … Continue reading Resource Center Office Hours: December 1 – Lia Hotchkiss and Aingyea C. Kellom

Design Power: Patients Play Researchers in Drug Trials

Scientists regularly sign up patients in clinical trials to test new treatments. Now, they are seeking patients to help them design some of those trials.

Patients and researchers can bring different perspectives to treating disease. In a trial of a potential prostate-cancer drug getting underway at the Icahn School of Medicine at Mount Sinai in New York, doctors had planned to ask patients periodically about side effects such as nausea. But patient input convinced them to ask additional questions, including how many days patients felt well enough to go to work.
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Free the Data announces new partnership with Rep. Debbie Wasserman Schultz

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

Big Data and the IRB Conference – October 24

Don’t miss the upcoming Big Data and the IRB Conference. This conference will explore current solutions and best practices to successfully collect, store and use large data and biospecimen collections with the approval of the IRB. Earn continuing education credit while attending live in Cambridge, MA or via webcast. Learn more about the event and … Continue reading Big Data and the IRB Conference – October 24