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.
Hospitals and Health Systems
Organizations where care is delivered, including public and private hospitals and health systems, urgent care centers, retail health clinics, and community health centers, and organizations representing these facilities
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.
Patient Advisory Council (PAC) Handbook
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.
PCORnet® CRN Population Insights 2024
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.
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.
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.