Interim Progress Report (IPR) Project Management Status Tracker

This Interim Progress Report (IPR) Project Management Status Tracker can help study teams divide IPRs into sections for better task distribution. It refers to previously submitted IPRs and is structured so instructions for each section are clear and precise. Researchers can adapt the form to manage their IPRs.

Access the Interim Progress Report (IPR) Project Management Status Tracker.

Investigator Collaboration Request Form

Researchers interested in collaborating with clinical research network (CRN) sites can use an Investigator Collaboration Request Form. The Collaboration Request Form collects current study status, inclusion/exclusion criteria, a site-specific scope of work, benefits for sites, and other key study information. Once completed by the study team, a coordinating center will distribute the form to CRN sites to inform them of the opportunity. Interested sites will indicate their interest via a separate form linked at the bottom of the document.

Access the Investigator Collaboration Request Form.

Patient and Community Engagement Consultation Form

This Patient and Community Engagement Consultation form can be used to document requests from collaborators to use a clinical research network's patient and community engagement services. Requestors will complete the form to provide details about their study including proposed methods for engagement and the level of engagement required. A Patient Partner will meet with the requestor to discuss tailored approaches to support meaningful engagement of patients and community partners in their research.

Access the Patient and Community Engagement Consultation Form.

Gene Therapy Data Report

This query of PCORnet data resources describes the patient population who have undergone gene therapy between January 1, 2016, and June 30, 2024, with distinct cohorts created for gene-therapy-eligible cancer patients and gene-therapy-eligible noncancer patients. The query results will enhance public awareness of the utilization of gene therapies by relevant health conditions across sites participating in PCORnet.

Access the Gene Therapy Data Report.

Mental and Behavioral Health Data Report

This report characterizes the patients with recorded diagnosis codes for mental and behavioral health (MBH) conditions that received care at health care settings across institutions participating in PCORnet.

The tables in this data report present aggregate data on patients with recorded diagnosis codes for MBH conditions, as well as the demographic characteristics, healthcare use, and prescribing of common psychiatric medications for these patients between January 1, 2021, to December 31, 2022. The data report will inform how PCORnet can be used for patient-centered CER studies on interventions related to MBH conditions, and to inform opportunities to enhance PCORnet data resources for MBH research.

Access the MBH Data Report

Access the related PCORI MBH Workgroup report on ways to accelerate patient-centered comparative clinical effectiveness research (CER) focused on MBH.

Characteristics of the Pediatric Population Across Clinical Research Networks Participating in PCORnet®

This query of PCORnet data resources describes the sociodemographic and clinical characteristics of the population of pediatric patients ages birth to 20 years old with at least one face-to-face health care encounter at a PCORnet partner site between January 1, 2023 – December 31, 2023. The query results enhance public awareness and provide investigators and the public with information on ways PCORnet can be used to conduct patient-centered CER to improve the health of children and youth.

Access the Pediatric Population Data Report.

Maternal Morbidity and Mortality (MMM) Data Report

This query of PCORnet® data resources describes the sociodemographic and clinical characteristics of a population of patients with a pregnancy-related event that had a healthcare encounter at a partner site between October 1, 2016 – January 1, 2022. The query results will inform how PCORnet can be used for patient-centered comparative clinical effectiveness research (CER) research on MMM and to inform opportunities to enhance PCORnet data resources for MMM research.

Access the MMM Data Report.

Access the related PCORI MMM Workgroup report on ways to accelerate patient-centered comparative clinical effectiveness research (CER) focused on MMM.

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 populations managed chronic conditions using telehealth services throughout the pandemic.

Access the telehealth data report here.

Intellectual and Developmental Disabilities Data 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 IDD Data Report.

Access the related PCORI IDD Workgroup report on ways to accelerate patient-centered comparative clinical effectiveness research (CER) focused on IDD.

Engagement Guidance & Resources for Patient-Centered “Data-Only” Studies

Patient-centered studies require a rightsized stakeholder engagement plan. The STAR CRN provides engagement guidance and resources for data-only studies such as observational, retrospective data abstractions that use EHR data from the sites participating in the STAR CRN. This can include electronic health record data from the STAR CRN Common Data Model (CDM), or from other electronic health record data sources that are being accessed as part of a STAR engaged project.

Access the engagement guide here.