This document provides a template to request sites to share PCORnet data elements. The guide includes details such as the impact of adding the data element for use in research projects, as well as the implications of each decision to share data.
Research
Local Studies Standard Operating Procedure
The Local Studies Standard Operating Procedure (SOP) can be used for the documentation of the process involved in the intake and management of studies entering through a Clinical Research Network (CRN) Front Door. From the inception of a request to the final close-out of the project, the document provides a detailed account of each stage, ensuring a comprehensive understanding of the workflow. This template can also be used for other SOP’s.
Clinical Research Collaboration Agreement
Use this PCORnet-approved agreement to speed the contracting process for PCORI-funded studies. This pre-negotiated template agreement can serve as a starting point for prime and site investigator negotiations. The result is time-savings in the contracting process for PCORI-funded studies since sites are already negotiated in advance.
SMART IRB and IREx List
This form gives investigators and project teams a consolidated view of which sites participating in PCORnet maintain an IRB. It also provides the site Federal Wide Assurance (FWA) number and notates which sites have signed the SMART IRB reliance agreement and registered in the IRB Reliance Exchange (IREx) platform. This site list is updated regularly and eliminates the need for investigators and project teams to search for key information in several different places.
Scholars Program Processes and Procedures
The PaTH Scholars Program was established to help researchers gain the skills and confidence needed to lead and participate in multi-site “real-world evidence” studies by mentoring and engaging scholars through hands-on participation alongside experienced PaTH researchers. This resource may be adapted by others wanting to create similar programs.
Rapid and Collaborative Response to COVID-19
Researchers responded rapidly and collaboratively to answer COVID-19 questions by using PCORnet resources including a flexible coordinating center, the PCORnet® Common Data Model, research-ready networks, and existing research studies that pivoted quickly. Researchers can use this resource to demonstrate how the resources of PCORnet can be used for studies that require fast answers.
How Common are New Symptoms and Conditions After COVID-19? Results from PCORnet
Summary of the CDC’s research on symptoms experienced more than 4 weeks after first being infected with the virus that causes COVID-19. Researchers studied data from electronic health records of 1.8 million adults and 300,000 children from 42 PCORnet network partners.
Scholars Program in Learning Health Systems Science
The PEDSnet Scholars Program is a set of 24 webinars that help build core competencies in Learning Health System science.
Template: Welcome Guide for Participating Sites
This template was created by Kellie Walters, MPH, UNC-Chapel Hill, part of the STAR Network, as a welcome guide for PIs participating in PCORnet. It may be used as a framework for other networks.
Non-technical PCORnet Common Data Model Introduction
This slide deck was created by Kellie Walters, MPH, UNC-Chapel Hill, part of the STAR Network, to introduce the PCORnet Common Data Model to patient stakeholders. The slides can be repurposed for any non-technical audience.