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Everyone Benefits From Research, But What Are Your Responsibilities?

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In his first blog post for US News and World Report, Seth Ginsberg, PI for the AR-PoWER PPRN, describes PCORnet as an emergent opportunity for patients to work more closely than ever before with researchers, leading to a much better understand of health conditions and outcomes.
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Genetic Alliance to Coordinate PCORI’s Patient Powered Research Networks

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Genetic Alliance has been awarded the contract to lead the PCORnet Coordinating Center effort to leverage the value of the Patient Powered Research Networks (PPRNs). The PPRNs are a unique aspect of PCORnet—an initiative funded by PCORI to harness the power of health information to conduct research faster, at lower cost, and with greater power and focus on patient needs and concerns.

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Patient-focused drug development moves into the mainstream

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Posted March 16, 2015, Applied Clinical Trials Building on the experience gained from FDA meetings soliciting patient perspectives, sponsors are now querying patient groups to help define the key goals of clinical studies, while the FDA is bringing in patients to consult with review divisions and to join FDA-sponsor meetings to help shape research studies … Continue reading Patient-focused drug development moves into the mainstream

IOM Discussion Paper: Integrating Research into Health Care Systems: Executives’ Views

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Summary of the results of a survey of attendees of the April 2014 Institute of Medicine workshop, sponsored by the Patient-Centered Outcomes Research Institute (PCORI): Heath System Leaders Working Toward High Value Care through Integration of Care and Research.
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In the News: NIH promotes use of single IRB to speed clinical research

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In a move to speed the initiation of clinical research in multi-site clinical studies by ensuring use of single institutional review boards (IRBs), the National Institutes of Health issued a draft policy. http://www.nih.gov/news/health/dec2014/od-03.htm
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Video Series Available: The Future of Patient Centricity in Clinical Research

A three-part educational video series exploring patient involvement in clinical research is available from PHT Corporation. The videos were recorded live at the PHT PRO & eCOA Congress.
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In the News: Summary of HHS/NIH proposals to enhance transparency of Clinical trial results

The Department of Health and Human Services and the National Institutes of Health (NIH) are releasing for public comment two proposals to increase the transparency of clinical trials via information submitted to ClinicalTrials.gov, a publicly accessible database operated by the National Library of Medicine (NLM), part of the NIH.
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In the News: IMPROVE-IT Study Findings Released

Dr. Robert Califf, a Duke cardiologist and the co-principal investigator for PCORnet, led a six-year study of a new cholesterol-lowering drug in the IMPROVE-IT trial.
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In the News: IOM’s report on EHRs

In this recent Institute of Medicine report, 17 domains were identified by a committee (featuring some PCORnet members, including Eric Larson from the Coordinating Center and Chris Forrest from PEDSnet). These domains were considered to be good candidates for inclusion in Electronic Health Records (EHRs). This report highlights 12 measures related to 11 of the initial domains and considers the implications of incorporating them into all EHRs.
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In the News: National Diabetes Education Program Releases Guiding Principles for Diabetes Care

The National Diabetes Education Program (NDEP) has recently published Guiding Principles for the Care of People With or at Risk for Diabetes …highlighting a set of 10 guiding principles focused on areas of agreement for diabetes care that could be clinically useful in diabetes management and prevention.

These are aimed at assisting with identification and management of the disease, self-management support for patients, physical activity and blood glucose control, among other topics. More than a dozen federal agencies and professional organizations support the document.

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