Industry

Companies that design, invest in, or manufacture diagnostics, devices, pharmaceuticals, electronic records systems, and mobile apps, and organizations representing the life sciences industry, such as the Advanced Medical Technologies Association

Patient and Community Engagement Consultation Form

Posted on by Alexis

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

Posted on by Jodi Snare

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

Posted on by Jodi Snare

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®

Posted on by Jodi Snare

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

Posted on by Jodi Snare

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

Posted on by Jodi Snare

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.

Tip Sheet for Researchers on Engaging Community Groups and Patient Partners

Posted on by Jodi Snare

This document is intended for researchers who are considering doing community engagement, particularly those who intend to establish a longstanding relationship with a community group or patient partner. It presents tips and advice gleaned from engagement experts, researchers, and patient partners in the PaTH CRN.

Access the tip sheet here.

INSIGHT Recruitment CONSORT Diagram

Posted on by Jodi Snare

The INSIGHT Recruitment CONSORT Diagram is a template to update the research team, Co-Investigator(s), Principal Investigator(s) (PI) and other stakeholders on recruitment strategies, methods of contact and results. The consort diagram can assist research teams in determining which recruitment strategies are the most effective.

Access the recruitment diagram.

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

Posted on by Jodi Snare

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.