Characterizing Telehealth Visits Across Clinical Research Networks Participating in PCORnet®, The National Patient-Centered Clinical Research Network

This query of PCORnet® data resources explores the use of telehealth services among patients at partner sites. The query results aim to showcase how the PCORnet infrastructure can identify disparities in telehealth delivery, understand trends pre- and post-COVID-19, and illustrate how underserved populations managed chronic conditions using telehealth services throughout the pandemic.

Access the telehealth query report here.

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.

Access the collaboration agreement here.

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.

Access the SMART IRB and IREx List here.

Intellectual and Developmental Disabilities Public Query Report

This query of PCORnet data resources describes a population of patients with intellectual and developmental disabilities (IDD) with a healthcare encounter at a partner site. This query is the largest known, national-scale descriptive analysis of IDD populations using electronic health record (EHR) data. Query results inform how PCORnet can be used for patient-centered comparative effectiveness research (CER) research on IDD and to inform opportunities to enhance PCORnet IDD data resources.

Access the Query Report.

Data Study Flow Resources – Basic

This diagram shows a basic data flow in a study powered by PCORnet® and is intended for sites to include in their IRB application. Using this document, project teams can ensure consistency in IRB applications and speed IRB submission by providing a template for sites to quickly fill in the blanks based on data flow in their study.

Access the Basic Data Study Flow Diagram.

Data Study Flow Resources – Complex

This diagram shows a complex data flow in a study powered by PCORnet® and is intended for sites to include in their IRB application. Using this document, project teams can ensure consistency in IRB applications and speed IRB submission by providing a template for sites to quickly fill in the blanks based on data flow in their study.

Access the Complex Data Study Flow Diagram.

Data Sharing Agreement

The Data Sharing Agreement (DSA) is an approved PCORnet template for use by research institutions to speed prep-to-research queries. The DSA defines the standard terms to which the Coordinating Center for PCORnet® will adhere when data are sent from the Network Partners to the Coordinating Center. The DSA also contains a template showing the flow of data through the queries.

Access the Data Sharing Agreement here.

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.

Access the resource here.

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.

Access the “Long COVID” Research Summary.

NORC Data Convenings Webinar: Expanding Social Determinants of Health Data across PCORnetExpanding Social Determinants of Health Data across PCORnet

The webinar discussed opportunities for social determinants of health (SDOH) data within the PCORnet data infrastructure. Objectives included: discussing the current status of SDOH data collection by PCORnet Network Partners; opportunities to optimize accessibility and availability of individual-, population-, and community-based SDOH data to support PCORnet research; and engaging stakeholders on short- and long-term infrastructure priorities to enhance SDOH data capture for network-wide research.

Access the Social Determinants of Health Data across PCORnet resources here.