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PCORI Guest Blog Explores the Role of Caregivers in Alzheimer’s Research

As new treatments become available, researchers should include the caregiver’s perspective in tests of those therapies because it is often the caregiver who administers the treatment and ensures compliance with medications. A new PCORI guest blog features the National Alzheimer’s & Dementia Patient & Caregiver-Powered Research Network also known as the Alzheimer’s Patient Powered Research … Continue reading PCORI Guest Blog Explores the Role of Caregivers in Alzheimer’s Research

PCORI Guest Blog Explores How Alzheimer’s Network Puts Caregivers at Center

Around 15 million Americans provide unpaid care for people with Alzheimer’s and other dementias. Along with patients, these caregivers are at the center of PCORnet’s Patient-Powered Research Network (PPRN) known as the Alzheimer’s PPRN. In a PCORI guest blog, two investigators—a caregiver and the network project director—describe their experiences with Alzheimer’s and reasons they think … Continue reading PCORI Guest Blog Explores How Alzheimer’s Network Puts Caregivers at Center

PCORnet Spotlights its Expertise at 2016 Health Datapalooza

PCORnet had a fantastic experience at this year’s Datapalooza, as it was an opportunity for us to showcase how we are harnessing the power of data and unique partnerships to conduct important health research faster, more efficiently, and at lower cost than was previously possible.

PCORnet collaborators Adrian Hernandez, MD, MHS, FAHA, Keith Marsolo, PhD, and Russ Waitman, PhD, spoke at Health Datapalooza. Hernandez gave an overview of PCORnet. Marsolo presented PCORnet’s model for sharing data. Waitman contributed to a session describing how variability in clinical information across electronic data sources hinders the exchange, collection, and analysis of health data.
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Patient Involvement in Research: Innovative, Patient-Powered, Welcoming

I’m a patient helping to change the culture of research and I am excited! It feels great to be empowered, encouraged, and a part of something larger than myself. I get to be a part of things I could only imagine someone else doing and do things I never really thought I could achieve. How did all this happen?
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PCORnet Leaders Participate in Policy Roundtable to Advance the Use of Real-World Evidence

On May 25th 2016, PCORnet leaders Adrian Hernandez and Russell Rothman were invited to participate in a Bipartisan Policy Center roundtable focused on advancing the generation and use of real-world evidence. The roundtable welcomed thought leaders from across industry and academia, including Amgen, Pfizer, Robert Wood Johnson Medical Group, and Duke, Columbia, and Yale Universities. Information generated from the roundtable and other activities, including interviews will multiple other members of PCORnet, will inform a final set of policy recommendations to be released by the Bipartisan Policy Center in late June.
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Placing Arthritis Research in Patients’ Hands

To mark this Arthritis Awareness Month, Ben Nowell and Kelly Clayton share their thoughts with PCORI about the Arthritis Partnership with Comparative Effectiveness Researchers (nicknamed ArthritisPower, or AR-PoWER). The ArthritisPower partnership is one of the Patient-Powered Research Networks that make up PCORnet. Read this PCORI Guest Blog to learn more about a patient-led, patient-centered research registry … Continue reading Placing Arthritis Research in Patients’ Hands

PCORnet Announces Enrollment of First Participant in ADAPTABLE Aspirin Study

“PCORnet is shifting the research paradigm through studies like ADAPTABLE by introducing a new genre of patient-centered research where patients are engaged to improve the science of clinical trial design,” said Adrian F. Hernandez, MD, MHS, director of outcomes and health services research at the Duke Clinical Research Institute (DCRI) and PCORnet’s Coordinating Center Co-Principal Investigator.
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How Parents, Patients, and Researchers Help Define the Future of Autism Research

In 2015, the Interactive Autism Network (IAN) became one of the Patient Powered Research Networks (PPRNs) that make up PCORnet. Established by the Kennedy Krieger Institute in 2006 to foster communication and trust between the autism community and researchers, (IAN) aims to improve understanding of the causes of, and discover treatments for, this complicated disorder.
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PCORnet’s Public Workshop on Building Trustworthiness: It’s Time to Walk the Talk

Scores of people — patients, researchers, and many other stakeholders — participated in the Building Trustworthiness in PCORnet meeting in Washington, DC, on March 28 and 29 to work on advancing a new model of research that is rooted in trust, honesty, and true partnerships between researchers and patients . Here are some key takeaways from that event.
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