This presentation discusses the MS Minority Research Engagement Survey, conducted by the iConquerMS PPRN in collaboration with the Accelerated Cure Project. This survey investigated why people belonging to minority groups have lower participation in MS studies. Although work has previously been done related to other diseases, this survey looked at MS research participation specifically. Use […]
This toolkit details the process MyApnea.org followed – from the proposal stage to event wrap-up and next steps – to set up the Learning Lounge and includes helpful sample materials. We hope you find the information useful for setting up your own live forum event in your community.
These materials originated from the PCORI Methods project, “Privacy-Preserving Analytic and Data-Sharing Methods for Clinical and Patient-Powered Data Networks” (https://www.pcori.org/research-results/2014/privacy-preserving-analytic-and-data-sharing-methods-clinical-and-patient). One of the project aims is to “Develop freely available dissemination tools, including analytic code, educational materials, technical documentation, and user guides for these privacy-preserving analytic and data-sharing methods.” As such, the project team is sharing the materials […]
PRO stands for Patient Reported Outcomes. It is defined by the U.S. Food and Drug Administration as any report of the status of a patient’s health condition that comes directly from the patient without interpretation of the patient’s response by a clinician or anyone else. This webinar, originally hosted on September 16th, 2015, discusses the […]
Collaborations across networks are an essential part of PCORnet. This webinar, originally hosted on September 29th, 2015 describes ways to collaborate between CDRNs and PPRNs. If you are interested in establishing such a relationship, please take a look at this session. Speakers: Dr. Russell Rothman, Mid-South CDRN Dr. Jeff Curtis, AR-POWER Dr. Ben Nowell, AR-POWER […]
Health eHeart is one of PCORnet’s many PPRNs. This PPRN is focused on cardiovascular health. This webinar, originally hosted on October 20th, 2015, can be used to learn more about this PPRN. Speakers: Madelaine Faulkner, Health eHeart Alliance
The Interactive Autism Network (IAN) is one of PCORnet’s PPRNs. This webinar, hosted on January 25th, 2016, will help inform you about IAN as a network and their work. Peruse this presentation to learn some new details about IAN. Speakers: Dr. Paul H. Lipkin, Interactive Autism Network Cheryl Cohen, Interactive Autism Network Dr. J. Kiely […]
PRIDEnet is a PPRN centered around Sexual and Gender Minorities as they are understudied, underserved, and vulnerable. This webinar, originally hosted on February 16th, 2016 introduces PRIDEnet, their population, and the PRIDE Study. This is an opportunity to learn more about this PPRN. Speaker: Dr. Juno Obedin-Maliver, University of California, San Francisco PCORnetBestPractices_PRIDEnet_Obedin-Maliver_17FEB16_FINAL-min
The PPRN Demographic Table 1 includes data from the 20 Phase II PCORnet PPRNs and was compiled as of March 1, 2017.
This is the application IAN uses to recruit subjects for its studies. Use it as an example for how to make your own applications.