Sensory Health Population Insights Report

This report describes the results of a data query of the patients with sensory-related health conditions that had at least 1 face-to-face encounter and a recorded diagnosis code (e.g., ICD-10) at a health care setting across PCORnet between January 1 – December 31, 2024. The query used a 5-year “look-back” period to identify patients with diagnosis codes for specific sensory-related health conditions that were reflected in the electronic health record. The query results will enhance public awareness of the population of patients with sensory health conditions as well as utilization of health care services by these patients across sites participating in PCORnet that potentially would be available for future health care research.

Access the Sensory Health Population Insights.

Metabolic and Endocrine Conditions Population Insights

This report describes the results of a data query of the patients with selected metabolic and endocrine conditions that had at least 1 face-to-face ambulatory encounter and a recorded diagnosis code (e.g., ICD-10) at a health care setting across PCORnet between January 1 – December 31, 2024. The query used a 5-year “look-back” period to identify patients with diagnosis codes for specific metabolic and endocrine conditions that were reflected in the electronic medical record. The query results will enhance public awareness of the population of patients with metabolic and endocrine conditions as well as diagnosis codes related to overweight and obesity across sites participating in PCORnet that potentially would be available for future health care research.

Access the Metabolic and Endocrine Conditions report here.

PCORnet® CRN Population Insights

This report describes the results of a data query of the patient population with at least 1 face-to-face encounter and a recorded diagnosis code (e.g., ICD-10) at a health care setting across PCORnet between January 1 – December 31, 2024. The query results will enhance public awareness of the population of patients across sites participating in PCORnet that potentially would be available for future health care research.

Access the PCORnet® CRN Population Insights.

Women’s Health Population Insights

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.

Access the Women’s Health Population Insights.

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.

GPC Tumor Table Transformation and Linkage

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.