The resources below include a final report and a concluding presentation from the PPRN EHR extraction pilot project whose objective was to evaluate the effectiveness and value of empowering individual participants to play an active role in making their own clinical data available for research through the use of a mobile app capable of downloading […]
The Rare Epilepsy Network (REN) has developed a website exclusively for visualization of their baseline data. This website shows a number of different visual representations of their data. These visual representations can be changed by clicking on different variables. This tool can be used to better understand the REN study population.
“PCORnet Recommendations for SOGI Data Elements in CDM v3.1” was written by co-directors Dr. Mitchell Lunn and Dr. Juno Obedin-Maliver. It is based on research literature, our co-directors’ clinical and research expertise, and definitely informed by participant data in our pilot research (~18,000 enrolled participants).
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 […]
This document discusses the NephCure Kidney Network Data Access Committee Standard Operating Procedures. This document covers what processes should be used by members to uphold NephCure Kidney Network data policies.
This document details NephCure Kidney Network’s External Data Sharing Policy, meaning it discusses the network’s data sharing procedures for projects outside of PCORnet. This policy can be used to learn more about NephCure Kidney Network’s policies or used to help develop a data sharing policy of your own.
The PCORnet EHR-extraction pilot project is underway with three PPRNs (Interactive Autism Network, NephCure Kidney Network, and Phelan McDermid Syndrome Data Network) to acquire electronic health record (EHR) data from network participants for the purposes of research. This implementation guide outlines the steps and resources necessary for an organization to begin acquiring structured EHR data through […]
Dr. Kho discussed how to protect and secure data online. He also explained the ongoing work to develop new security features. Speaker: Dr. Abel Kho, CAPriCORN PCORnet_Best_Practices_4_29_15 Presented on April 29, 2015
This presentation goes over the differences between intellectual property and data, Open Access, attributions, and CC licenses. Speaker: John Wilbanks pcori cc wilbanks ppt Presented on January 26, 2015
Dr. Toh and Dr. Li gave examples of research conducted within distributed networks with horizontally partitioned data. They then hosted a discussion and spoke about how vertically partitioned data could be useful to PCORnet. Speakers: Dr. Darren Toh, Harvard Medical School/Harvard Pilgrim Health Care Institute Dr. Lingling Li, Harvard Medical School/Harvard Pilgrim Health Care Institute Statistical analyses […]