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Diversity, Communication and Trust: Three PPRNs Share the Recipe for Effective Engagement in Rare Disease Research

Imagine you are a patient who has just been diagnosed with primary Nephrotic Syndrome. Your doctor explains to you that this is a rare kidney disorder and then hits you with the gut punch: there is no known cause, no cure, and no FDA-approved medication for treatment. We often think of rare conditions as something … Continue reading Diversity, Communication and Trust: Three PPRNs Share the Recipe for Effective Engagement in Rare Disease Research

Early Registration Open for PCORI Annual Meeting

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Early registration is now open for the PCORI Annual Meeting, which will take place Oct. 31- Nov. 2nd in Arlington, Va.  More than 1,000 members of the health care community will gather for this two-and-a-half day event which will include updates on how scientists, patients, caregivers, clinicians, payers, and others are working together to make … Continue reading Early Registration Open for PCORI Annual Meeting

People-Centered Research Foundation Names Kathy Hudson Executive Director

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The People-Centered Research Foundation (PCRF) announced today that Kathy L. Hudson, PhD, has joined the organization as executive director. Hudson most recently served as deputy director for Science, Outreach, and Policy at the National Institutes of Health (NIH). At the PCRF, she joins a team of national leaders in clinical research who established the nonprofit … Continue reading People-Centered Research Foundation Names Kathy Hudson Executive Director

NESTcc Selects PCORnet Leaders for Inaugural Governing Committee

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Several leaders from PCORnet, the National Patient-Centered Clinical Research Network, PCORI and the People-Centered Research Foundation (PCRF) have been selected to serve on the inaugural Governing Committee for the National Evaluation System for health Technology Coordinating Center (NESTcc), including: Naomi Aronson, PhD – Executive Director of Clinical Evaluation, Innovation, and Policy at the Blue Cross … Continue reading NESTcc Selects PCORnet Leaders for Inaugural Governing Committee

Let Your Voice Be Heard: MyPaTH Story Booth Empowers Communities to Share Their Stories

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What makes a clinical study meaningful? For PCORnet, the National Patient-Centered Clinical Research Network, the answer is simple: meaningful research reflects the voice of communities, addressing questions and concerns that are relevant to the real world. PaTH, a PCORnet Clinical Data Research Network (CDRN) funded by PCORI, is making these voices more accessible with the … Continue reading Let Your Voice Be Heard: MyPaTH Story Booth Empowers Communities to Share Their Stories

PCORnet Partners Highlighted Throughout AcademyHealth’s Annual Research Meeting

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As the networks and studies within the National Patient-Centered Clinical Research Network, PCORnet, an initiative of the Patient-Centered Outcomes Research Institute (PCORI), continue to grow and mature, the impact of PCORnet itself is also growing. This growth was evident at AcademyHealth’s Annual Research Meeting (ARM) held June 25-27th in New Orleans where PCORnet leaders from … Continue reading PCORnet Partners Highlighted Throughout AcademyHealth’s Annual Research Meeting

REACHnet Research Featured at AcademyHealth’s Annual Research Meeting

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Leaders from REACHnet, a PCORI-funded PCORnet CDRN based in Louisiana, took advantage of the HealthAcademy’s Annual Research Meeting (ARM) New Orleans location this year by participating in several panel discussions and presentations, including: A presentation during a session on Patient Voices in Research and Quality Improvement: “Engaging Stakeholders to Develop a Patient-Centered Research Agenda: Methods … Continue reading REACHnet Research Featured at AcademyHealth’s Annual Research Meeting

PCORnet Highlighted in Recent Publications

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PCORnet, the National Patient-Centered Clinical Research Network, a PCORI initiative, was recently highlighted in two articles that underscore its increasing influence as a leader in the movement toward patient-centered research. The first was authored by PCORnet’s Patient Outcomes Research to Advance Learning (PORTAL) Clinical Data Research Network (CDRN) and published in Obesity. It explores the … Continue reading PCORnet Highlighted in Recent Publications

PCORnet Partner Networks Collaborate with Federal Agencies to Evaluate Effects of Health Policy on Diabetes Outcomes

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Do you know somebody affected by diabetes? With more than 29 million Americans suffering from Type 1 or Type 2 diabetes and another 86 million affected by prediabetes, chances are, you do. In fact, diabetes has become so prevalent that the prevention and management of these serious diseases have become a national priority. In March … Continue reading PCORnet Partner Networks Collaborate with Federal Agencies to Evaluate Effects of Health Policy on Diabetes Outcomes

PCORnet Joins Forces with Sentinel to Link Data for More Robust Public Health Research

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What if the National Patient-Centered Clinical Research Network (PCORnet) teamed up with another robust distributed research network to combine powers in the pursuit of clinical research? Could researchers use the linkage to enhance complete data for surveillance and glean insights that allow people to make better informed, evidence-based decisions on important health-related matters? A new … Continue reading PCORnet Joins Forces with Sentinel to Link Data for More Robust Public Health Research