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
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.
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.
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.
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.
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.
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.
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.
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.
The PCORnet tumor table contains data from hospital tumor registries that are formatted according to standards developed by the North American Association of Certified Cancer Registrars (NAACCR). All hospitals that are accredited by the American College of Surgeons Commission on Cancer employ trained registrars to abstract medical record data according to these specifications. Researchers can use this resource transform their own tumor registries.
Access the GPC Tumor Table Transformation and Linkage
Structured fields for demographic, clinical, and treatment observations are included, and the data are considered to be high quality. GPC tumor table documentation includes specifications for data formats, quality checks, and relationships with other CDM tables. This standardization allows linkages between NAACCR data and the other CDM tables. It also allows queries of the NAACCR data to be quickly deployed across the network.
GPC sites have already transformed their hospital tumor registry data into the PCORnet TUMOR table format. Table specifications can be found here. A sample ETL code and workflow are attached for references.
To assess the quality and quantity of tumor registry data found in the TUMOR table at GPC sites, a quality control script was created to be run against the newly created TUMOR tables. QC reports are being used for quality evaluation.
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.