Guide

Master Code Set

Posted on by Jodi Snare

The master code set provides a centralized, standardized reference of clinical codes across various disease areas along with their corresponding descriptions and classifications. It is designed to support consistent cohort definition, analysis, and reporting by ensuring uniform use of codes across studies and sites. By consolidating all relevant codes into a single, curated resource, the master code set reduces ambiguity, improves reproducibility, and streamlines multi-site research workflows. This comprehensive mapping enables researchers to efficiently identify, compare, and analyze patient populations across a wide range of conditions and data domains.

View the master code set. (Excel File)

OCHIN-ADVANCE Patient Engagement Panel Handbook

Posted on by Jodi Snare

The OCHIN-ADVANCE Clinical Research Network (CRN) Patient Engagement Panel (PEP) Guidebook was created to describe engagement policies, procedures, benefits, and practices. This can be used to inform development of a governance framework for stakeholder participation in a community and research setting.

Access the PEP Handbook here.

OCHIN-ADVANCE Engagement and Recruitment Guide

Posted on by Jodi Snare

This document is an introductory guide for those interested in working with the OCHIN-ADVANCE Clinical Research Network (CRN). It describes engagement and recruitment activities and gives points of contact within the network. This can be used for stakeholders formulating documentation on engagement and recruitment activities.

Access the resource here.

Patient Advisory Council (PAC) Handbook

Posted on by Jodi Snare

This handbook describes the policies, procedures, benefits, and practices of the Greater Plains Collaborative (GPC) Patient Advisory Council (PAC) membership and engagement opportunities. This resource can be used by researchers and other stakeholder groups that are interested in creating a PAC to make their research more patient-centered.

Access the Patient Advisory Council Handbook.

Common Data Model (CDM) Data Quality Validation

Posted on by Jodi Snare

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.

Access the CDM Data Quality Validation guide here.

OCHIN-ADVANCE Engagement Core Values, Functions, and Metrics

Posted on by Jodi Snare

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

Patient Partner Recruitment & Selection Toolkit

Posted on by Jodi Snare

This toolkit includes resources for recruiting and selecting a network patient partner, including a Patient Partner Position Description & Application Instructions and an Interview Guide & Evaluation. The toolkit may be adapted to local context for use by other research networks or consortia seeking to include patients in governance.

Access the toolkit here.

PCORnet Focused Data Elements Addition Proposal for Centralized Networks

Posted on by Jodi Snare

This document provides a template to request sites to share PCORnet data elements. The guide includes details such as the impact of adding the data element for use in research projects, as well as the implications of each decision to share data.

Access the Data Elements Template here.

Local Studies Standard Operating Procedure

Posted on by Jodi Snare

The Local Studies Standard Operating Procedure (SOP) can be used for the documentation of the process involved in the intake and management of studies entering through a Clinical Research Network (CRN) Front Door. From the inception of a request to the final close-out of the project, the document provides a detailed account of each stage, ensuring a comprehensive understanding of the workflow. This template can also be used for other SOP’s.

Access the Local Studies SOP here.

GPC Tumor Table Transformation and Linkage

Posted on by Jodi Snare

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.