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Rare Epilepsy Network: REN Newsletters – 2017 August to November 2018

Quarterly newsletter of the Rare Epilepsy Network - developed by the REN program manager to disseminate information to REN participants, Steering Committee members, and the public.

LikeBrandy Fureman, PhD   Updated: April 1, 2019

Rare Epilepsy Network: Rare organization snapshot template

This template was created to capture information about 30+ rare epilepsy organizations in the Rare Epilepsy Network. We have used these snapshots in workshop materials to provide a quick overview of each organization for meeting participants.

LikeBrandy Fureman, PhD   Updated: April 1, 2019

DuchenneConnect PPRN Resources: Responses to Community Needs and Data Reporting

This describes the resources of The Duchenne Registry and Parent Project Muscular Dystrophy’s online platforms. The authors of these materials are Parent Project Muscular Dystrophy staff, RTI staff, and community advisors (individuals with Duchenne, parents, clinical and research experts). The need for these tools and content were identified through: voting and ranking at PPMD annual meetings; social media and social engagement platforms; advisory committees, work groups and roundtables; survey and interview data. Duchenne Registry 10-year report: Objective is to report, in a community-friendly approach, aggregated data from the registry. Published on January 15, 2019. Clinical Trials: This section helps parents...

LikeMadelyn McKeague   Updated: April 1, 2019

PCORnet CC: Dissemination of Results

A guidance document from the Research Innovations Workgroup of the PCORnet Research Committee. Published: September 4, 2018 Authors: Tim Carey, Tom Carton, Elizabeth Cope, Sue Friedman, Rebecca Moultrie, Jamie Roberts, and Frances Weaver

LikeMina Baqai   Updated: March 20, 2019

Best Practice Sharing Session: Clinic Staff as a Unique Stakeholder Group in Patient-Centered Outcomes Research

Research Action for Health Network (REACHnet) and LPHI discuss the role of clinic staff in patient-centered outcomes research. Through a project funded by the PCORI Eugene Washington Engagement Award, LPHI implemented pragmatic research studies that resulted in a training workbook to help clinic staff better understand the research process and eliminate implicit bias. Speaker: Daniele Farrisi Presented: March 19, 2019

LikeMadelyn McKeague   Updated: March 20, 2019

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