This report describes the results of a network data query of the patient population of women receiving health care services at clinical sites across PCORnet between January 1, 2019 – December 31, 2023. The query results will enhance public awareness of the population of patients that are women across sites participating in PCORnet that potentially would be available for future health care research.
Resources
Research Review and Prioritization Group (RRPG) Researcher Template Deck
This RRPG Researcher Template Deck can help investigators prepare presentations for a research review. The template outlines required study information, including grant status and site-specific requests. The completed slides can be provided prior to a presentation so reviewers can familiarize themselves with the project and provide better feedback.
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.
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.
Common Data Model (CDM) Data Quality Validation
This document outlines the data quality validation processing for populating the CDM data model and defines measures that each domain follows during validation processing. Data quality validation covers several aspects including data content validation, data integrity and data profiling, with the goal of improving data content quality and integrity of the CDM data model. Research sites can use this guide locally to help improve their data prior to populating the CDM. Implementing this ahead of time causes fewer data check failures during the data curation process.
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.
OCHIN-ADVANCE Engagement Core Values, Functions, and Metrics
OCHIN-ADVANCE outlined its priorities and metrics for engagement across patient and caregiver groups in this snapshot. This resource can be used by researchers and other stakeholder groups seeking to improve their level of engagement with patients and caregivers to support a patient-centered research process.
Access the Engagement Core Values, Functions, and Metrics document
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.