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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 Added 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 Added 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 Added March 20, 2019

ABOUT Network: Researcher Collaboration Request Form

The form used by the ABOUT Network and FORCE for researchers to request their patient engagement efforts and services. Published: January 2, 2019 Author: Sue Friedman, DVM

LikeSue Friedman Added March 5, 2019

Best Practice Sharing Session: Engagement in PCORnet 1.0: Results of the Engagement Assessment Project

PCORnet has prioritized engagement as a key function in transforming healthcare research. However, there was little investment in capturing and scientifically assessing engagement activities in PCORnet. The Genetic Alliance Coordinating Center set out to capture, review and publish the resources, best practices, and lessons learned from PCORnet and its networks. Presented: November 20, 2018 Speakers: Sharon Terry, MA and Andrea Goodman, MSW, MPH

LikeMadelyn McKeague Added March 5, 2019

ImproveCareNow: Travel Toolkit

This toolkit was created by members of the Patient Advisory Council (PAC) of ImproveCareNow. The purpose of this toolkit is to share personal stories about traveling with Crohn’s disease and ulcerative colitis, answer questions, and identify tips and techniques that can make travel easier, safer and more comfortable. Use this to inform the creation of people-centered, condition-specific tools for improving quality of life. Published: October 16, 2018

LikeJoanna Ball Added February 26, 2019

PCORnet Governance Materials

The table below contains an evolving compilation of governance resources and tools from across PCORnet. Charters and By-laws IBD Partners: 2016 Patient Governance Council By-laws PRIDEnet: Participant Advisory Committee Bylaws PRIDEnet: The PRIDE Study Participant Advisory Committee PAC By-laws COPD PPRN: Governing Board Charter Template MS-PPRN: iConquerMS Engagement Committee Charter Approved Signed MS-PPRN: iConquerMS Governing Board Charter MS-PPRN: iConquerMS Research Committee Charter MS-PPRN: iConquerMS Research Committee Charter Approved and Signed NephCure Kidney Network: Steering Committee Charter PMS-DN: Parent Action Committee Charter IAN: Community Advisory Council Charter Codes of Conduct, Group Norms, and Standard Operating Procedures Greater Plains Collaborative: Engagement Meeting...

LikeJoanna Ball Added November 14, 2018

PCORnet Engagement Assessment Project: Findings and Recommendations

This report supports understanding of the current landscape of engagement in PCORnet, identifies emerging promising practices, and provides a framework and baseline for future work aimed at assessing network engagement. Published: September 2018

LikeJoanna Ball Added March 1, 2019

PCORnet Communications and Marketing Materials

Below you'll find a list of communications and marketing materials networks have used in their outreach efforts. This list will continue to evolve as more resources are made available. Brochures, Flyers, and Posters ImproveCareNow: Tri-Fold Brochure Sample MS-PPRN: iConquerMS Brochure MS-PPRN: iConquerMS Fact Sheet REN: 3ft x 6ft Poster Template REN: Top 10 Reasons to Participate Infographics and Fact Sheets ADVANCE: Patient Engagement Panel (PEP) Recruitment Flyer CENA: Outreach Flyer Example CENA:Outreach Rack Card  Example IBD Partners: Citizen Scientist Infographic ImproveCareNow: OurSuccess Infographic Newsletters and Blogs ADVANCE: Newsletter Example COPD PPRN: Post Newsletter IBD Partners: October 2016 Newsletter Example ImproveCareNow:...

LikeJoanna Ball Added October 16, 2018

PaTH Network Protocol Review Committee (PNPRC)

The PaTH Network Protocol Review Committee (PNPRC) meets to provide an inclusive pre-IRB review of all multi-site network studies going through a central IRB process. Composed of one patient or community partner and one IRB-affiliated member from each participating site, the PNPRC review ensures each of many diverse communities and institutions have input on the research in which they participate. Outline of the process: Study team notifies PNPRC when materials will be ready for review A PNPRC meeting is scheduled for at least 1 week after receipt of study materials Approximately 1 week after the PNPRC meeting, a summary document...

LikeJoanna Ball Added February 27, 2019