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Invisible No More: COPD PPRN Moves Research Forward to See the Full Picture

Authors: Elisha Malanga is the Chief Research Officer of the COPD Foundation, a patient-led advocacy organization dedicated to improving the lives of those affected by COPD and the prime organization for the COPD Patient-Powered Research Network (COPD PPRN). She has worked with the COPD Foundation since 2008 and has led numerous efforts including the creation of … Continue reading Invisible No More: COPD PPRN Moves Research Forward to See the Full Picture

Unlocking Patient and Caregiver Partnerships in Obesity Research: ObesityWeek 2017

As researchers dive into the details of obesity science, they are learning that, like most mechanisms of the human body, obesity is a result of myriad factors at play. In simpler terms, if the relationship between excess weight and the human body were to have a Facebook status, it would almost certainly be: “it’s complicated.” … Continue reading Unlocking Patient and Caregiver Partnerships in Obesity Research: ObesityWeek 2017

2017 PCORI Annual Meeting Features PCORnet Research and Opportunities

“Delivering Results, Informing Choices.” That was the theme of the 2017 Patient-Centered Outcomes Research Institute (PCORI) Annual Meeting, and PCORI naturally wanted to showcase how its most ambitious effort to date is bringing that theme to life. That’s why it’s no surprise that PCORnet, the National Patient-Centered Clinical Research Network, was front and center at … Continue reading 2017 PCORI Annual Meeting Features PCORnet Research and Opportunities

Academic Medicine Features PCORnet Partner Network OneFlorida

Florida is an ideal place to conduct clinical research in real-world settings where people receive healthcare. As the state with the third highest population in the country, Florida is known for its racial, ethnic, and geographic diversity. This makes it well suited to test how healthcare practices impact a broad range of people. However, to … Continue reading Academic Medicine Features PCORnet Partner Network OneFlorida

When Opportunity Knocks: PCORnet’s ‘Front Door’ Offers Researchers Fast, Easy Access to Rich Data

PCORnet, the National Patient-Centered Clinical Research Network, a PCORI initiative, is increasingly generating buzz as a game changer in clinical research. The Network has been described in many ways: a bridge that unites patients, families, providers, and researchers; a learning health system with the power to drive more meaningful, faster, and less costly patient-centered insights; … Continue reading When Opportunity Knocks: PCORnet’s ‘Front Door’ Offers Researchers Fast, Easy Access to Rich Data

Attending AMIA 2017? Here’s What You Need to Know

The American Medical Informatics Association (AMIA) is set to hold its biggest conference to date on November 4-8, 2017, in Washington, DC. Numerous PCORI and PCORnet colleagues will be there sharing leading-edge scientific research. AMIA’s 2017 Annual Symposium will host over 100 scientific sessions, presenting work spanning translational bioinformatics, clinical research informatics, public health informatics, … Continue reading Attending AMIA 2017? Here’s What You Need to Know

Matching Patients to Clinical Trials for People Affected by Hereditary Cancers

Author: Sue Friedman, DVM, is Executive Director for Facing Our Risk of Cancer Empowered (FORCE) which is a lead organization in PCORnet’s ABOUT Patient Powered Research Network (PPRN).  Friedman is a Co-Principal Investigator for ABOUT. It’s an exciting time for hereditary cancer research as the pace of new personalized medicine treatments and targeted therapies has … Continue reading Matching Patients to Clinical Trials for People Affected by Hereditary Cancers

PCORnet Executive Committee Welcomes Three New Members, Names New Chair

The PCORnet Council, the main governing body of PCORnet, has approved the slates for PCORnet’s Executive Committee, welcoming three new committee members and appointing a new committee chair. Kiely Law, research associate in the Department of Pediatrics at the Johns Hopkins School of Medicine and co-founder of the Interactive Autism Network (IAN), has joined the … Continue reading PCORnet Executive Committee Welcomes Three New Members, Names New Chair

PCORnet Leaders Speak Out at Public Workshop to Further Use of Real-World Evidence

The Duke Margolis Center for Health Policy and U.S. Food and Drug Administration (FDA) recently hosted a public workshop to discuss how to effectively use real-world evidence (RWE) – the insights gleaned from information collected outside of a clinical trial, such as electronic medical records—in drug development and regulatory decision-making. PCORI and its innovative initiative, … Continue reading PCORnet Leaders Speak Out at Public Workshop to Further Use of Real-World Evidence

PARTNERS PPRN Uses Health Literacy Tools to Empower Patients

Authors: Vincent Del Gaizo is the father of a systemic onset juvenile idiopathic arthritis patient diagnosed in 2001 at 15 months of age. For the past 12 years, he has been actively involved in the field of pediatric rheumatology research, directly contributing the patient voice and perspective to research initiatives in these rare diseases. He was … Continue reading PARTNERS PPRN Uses Health Literacy Tools to Empower Patients