The STAR Clinical Research Network has developed a glossary of research acronyms and terms to help others who may encounter these terms in the course of their research.
Industry
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
Intellectual and Developmental Disabilities Data Report
This query of PCORnet data resources describes a population of patients with intellectual and developmental disabilities (IDD) with a healthcare encounter at a partner site. This query is the largest known, national-scale descriptive analysis of IDD populations using electronic health record (EHR) data. Query results inform how PCORnet can be used for patient-centered comparative effectiveness research (CER) research on IDD and to inform opportunities to enhance PCORnet IDD data resources.
INSIGHT Recruitment CONSORT Diagram
The INSIGHT Recruitment CONSORT Diagram is a template to update the research team, Co-Investigator(s), Principal Investigator(s) (PI) and other stakeholders on recruitment strategies, methods of contact and results. The consort diagram can assist research teams in determining which recruitment strategies are the most effective.
Engagement Guidance & Resources for Patient-Centered “Data-Only” Studies
Patient-centered studies require a rightsized stakeholder engagement plan. The STAR CRN provides engagement guidance and resources for data-only studies such as observational, retrospective data abstractions that use EHR data from the sites participating in the STAR CRN. This can include electronic health record data from the STAR CRN Common Data Model (CDM), or from other electronic health record data sources that are being accessed as part of a STAR engaged project.
Patient and Stakeholder Engagement Policy
The Research Action for Health Network (REACHnet) Clinical Research Network (CRN) has developed a comprehensive Engagement Policy to advance the mission of PCORI to meaningfully engage patient and other stakeholders in the research process. This document can serve as guidance for stakeholders interested in patient-centered research.
Rapid and Collaborative Response to COVID-19
Researchers responded rapidly and collaboratively to answer COVID-19 questions by using PCORnet resources including a flexible coordinating center, the PCORnet® Common Data Model, research-ready networks, and existing research studies that pivoted quickly. Researchers can use this resource to demonstrate how the resources of PCORnet can be used for studies that require fast answers.
How Common are New Symptoms and Conditions After COVID-19? Results from PCORnet
Summary of the CDC’s research on symptoms experienced more than 4 weeks after first being infected with the virus that causes COVID-19. Researchers studied data from electronic health records of 1.8 million adults and 300,000 children from 42 PCORnet network partners.
Building Stakeholder Capacity to Engage around Technical Content
This webinar could be a helpful resource for researchers and organizations working to engage patients in discussions and decision-making related to complex and highly technical topics. Panelists Monique Does (Kaiser Permanente) and Liz Salmi (OpenNotes) discuss tools and strategies for engaging stakeholders in research data and methodology topics, and their own experiences with this type of engagement from a researcher and patient/researcher perspective. Greg Merritt (PaTH Network) moderates.
Digital Tools for Facilitating Patient/Partner Engagement
This townhall-style webinar can be used by researchers and organizations interested in learning more about using digital tools and strategies to engage patients and other stakeholders in research. Panelists Shilpa Venkatachalam and Dana Goodlett discuss unique tools to support patient partner engagement in research and explore the opportunities and challenges for scaling and sustaining these types of tools. Bray Patrick-Lake moderates the session.
HERO Data Dictionary
Use this resource to review information, content, format, and structure of the HERO (Healthcare Worker Exposure Response & Outcomes) Research database and the relationship between its elements.