Other

Teaming Researchers Up with Stakeholders to Test Trustworthy Engagement and Measure: TRUST TEAM

Posted on by Jodi Snare

Page last updated May 11, 2026

ClinicalTrials.gov#: NCT07358559
Study Design: Other
PCORnet Infrastructure: Single IRB, Patient partners or engagement
Principal Investigator: Virginia A. Brown
Institution: The Hastings Center for Bioethics
Funder: Patient-Centered Outcomes Research Institute (PCORI); (Project webpage)
Funding Date: 2024
Study Duration: 2025 - 2028
Therapeutic Area: Engagement Methods
Status: Not yet recruiting

Research Question(s): Do individuals' beliefs about the trustworthiness of a university and other research organizations (e.g., academic medical centers) correlate to how much they trust researchers they partner with on research projects?

Oregon Medicaid Policy, Social Services, and Health (RESOLVE)

Posted on by Jodi Snare

Page last updated May 11, 2026

Study Design: Other
PCORnet Infrastructure: Common Data Model (CDM), Single IRB, Patient partners or engagement
Principal Investigator: Caroline Fichtenberg and Danielle Hessler Jones
Institution: University of California, San Francisco
PCORnet® Network Partner: ADVANCE
Funder: Federal (NIH)
Funding Date: 2024
Study Duration: 2024 – 2029
Participating PCORnet® Clinical Research Networks: ADVANCE, REACHnet
Therapeutic Area: Healthcare Delivery
Status: Active, not recruiting

Research Question(s):

Oregon implemented new Medicaid policies intended to increase referrals to connect patients endorsing specific social risks with local non-medical services.

  1. How do Oregon's new Medicaid policies impact rates of screening, referrals, and receipt of services for
    social needs?
  2. Do these policies decrease the difference in rates of screening, referrals, and receipt of services between various demographic groups?
  3. How do screening, referrals, and receipt of services for social needs impact chronic disease outcome and
    healthcare utilization? Is the impact different for various demographic groups?

Advancing Public Health Use of Electronic Health Record Data

Posted on by Jodi Snare

Page last updated May 11, 2026

Study Design: Other, Data Science
PCORnet Infrastructure: Common Data Model (CDM), Patient partners or engagement
Principal Investigators: Jason P. Block and Tom Carton
Institution: Other
Funder: Federal (CDC)
Funding Date: 2024
Study Duration: 2024 – 2026
Participating PCORnet® Clinical Research Networks: ADVANCE, GPC, INSIGHT, OneFlorida+, PaTH, PEDSnet, REACHnet, STAR
Therapeutic Area: Infectious Disease
Condition: Other; Public health surveillance across COVID-19, influenza and select chronic diseases and other infectious diseases
Status: Active, not recruiting

Research Question(s):

How can we use nationally distributed healthcare data infrastructure to (1) improve the capacity of data and information systems to conduct monitoring and surveillance and (2) increase the capability to use data to inform public health decision-making and support evidence-based practices and policies?

Primary Publication(s):

Zhang, Y., Romieu-Hernandez, A., Boehmer, T.K. et al. Association between SARS-CoV-2 infection and select symptoms and conditions 31 to 150 days after testing among children and adults. BMC Infect Dis 24, 181 (2024). doi.org/10.1186/s12879-024-09076-8

Jackson SL, Lekiachvili A, Block JP, et al. Preventive Service Usage and New Chronic Disease Diagnoses: Using PCORnet Data to Identify Emerging Trends, United States, 2018-2022. Prev Chronic Dis. 2024 Jul 3;21:E49. doi: 10.5888/pcd21.230415

Ghildayal N, Nagavedu K, Wiltz JL, et al. Public Health Surveillance in Electronic Health Records: Lessons From PCORnet. Prev Chronic Dis. 2024 Jul 11;21:E51. doi: 10.5888/pcd21.230417

Achieving Equity: Inclusion of Adults with Congenital Heart Disease (CHD) Living with Neurodevelopmental Disorders (NDDs) in Patient Centered Outcomes Research

Posted on by Jodi Snare

Page last updated April 14, 2026

Study Design: Other, Mixed method study - has a prospective cohort
PCORnet Infrastructure: Common Data Model (CDM), Patient partners or engagement
Principal Investigator: Anitha John
Institution: Children's National Hospital
PCORnet® Network Partner: PEDSnet
Funder: Patient-Centered Outcomes Research Institute (PCORI); (Project webpage)
Funding Date: 2024
Study Duration: 2024 – 2028
Participating PCORnet® Clinical Research Networks: OneFlorida+; PEDSnet, REACHnet, STAR
Therapeutic Area: Cardiovascular
Status: Recruiting

Research Question(s):

1) What are the engagement strategies needed for individuals living with NDD and CHD?
2) What metrics (such as surveys, focus groups, etc.) can be employed to measure engagement in individuals living with NDD?

USDHub: Community Resource for Urinary Stone Disease Research

Posted on by Jodi Snare

Page last updated May 11, 2026

Study Design: Other, Real World Evidence
PCORnet Infrastructure: Common Data Model (CDM), Single IRB, Patient partners or engagement
Principal Investigator: Ryan Hsi
Institution: Vanderbilt University Medical Center
PCORnet® Network Partner: STAR
Funder: Federal (NIH)
Funding Date: 2024
Study Duration: 2024 – 2029
Participating PCORnet® Clinical Research Networks: PEDSnet, STAR
Therapeutic Area: Nephrology
Status: Active, not recruiting

Research Question(s): Can a data resource be created to strengthen urinary stone disease research that will generate new knowledge that improves the health of all individuals with urinary stone disease?

Transfer Learning NLP to Improve Adoption of Clinical Text in Multi-Site Studies

Posted on by Jodi Snare

Page last updated April 14, 2026

Study Design: Other, Data Science
PCORnet Infrastructure: Common Data Model (CDM), Patient partners or engagement
Principal Investigator: Yonghui Wu
Institution: University of Florida and University of Florida Health
PCORnet® Network Partner: OneFlorida+
Funder: Patient-Centered Outcomes Research Institute (PCORI); (Project webpage)
Funding Date: 2024
Study Duration: 2024 – 2027
Participating PCORnet® Clinical Research Networks: INSIGHT, OneFlorida+
Therapeutic Area: Data Science
Status: Active, not recruiting

Research Question(s): Can large language models - an advanced form of artificial intelligence (AI) - improve the generalizability of patient information extraction and clinical phenotyping across different healthcare systems?

Measuring Co-creation During the Engagement Process in Research: A Pathway Forward

Posted on by Jodi Snare

Page last updated March 12, 2026

Study Design: Other, Measurement development and validation
PCORnet Infrastructure: Single IRB, Patient partners or engagement
Principal Investigator: Monica Perez Jolles
Institution: University of Colorado
PCORnet® Network Partner: External
Funder: Patient-Centered Outcomes Research Institute (PCORI); (Project webpage)
Funding Date: 2023
Study Duration: 2023 – 2026
Participating PCORnet® Clinical Research Networks: ADVANCE, PaTH, REACHnet
Therapeutic Area: Engagement Methods
Status: Completed

Research Question(s): How can we measure the process of co-creation in a way that is pragmatic, valid, reliable, and associated with meaningful engagement outcomes?

Primary Publication(s):

Jolles MP, Willging C, Tufte J, et al. Development and validation of a pragmatic measure of cocreation in research engagement: a study protocol. BMJ Open. 2024;14(12):e091966. doi: 10.1136/bmjopen-2024-091966

Measurement Matters: Refining and Validating a Patient-Centered Outcomes Research Engagement Measure

Posted on by Jodi Snare

Page last updated May 11, 2026

 

Study Design: Other
PCORnet Infrastructure: Single IRB, Patient partners or engagement
Principal Investigator: Marc A. Cohen
Institution: University of Massachusetts Boston
PCORnet® Network Partner: External
Funder: Patient-Centered Outcomes Research Institute (PCORI); (project webpage)
Funding Date: 2023
Study Duration: 2023 – 2025
Participating PCORnet® Clinical Research Networks: GPC, INSIGHT, PEDSnet, REACHnet, STAR
Therapeutic Area: Engagement Methods
Status: Not yet recruiting

Research Question(s):

  1. Can we develop a concise way to measure the extent to which researchers engaging older adults in research projects are doing so effectively and can we assign a score that represents a value for the quality of engagement?
  2. Having done this, can we then apply this new measure to score projects that are engaging older adults in research and see whether higher quality engagement scores are related to better short and medium term PCOR project outcomes?

HERO Registry & Trial: Healthcare Worker Exposure Response and Outcomes

Posted on by Jodi Snare

Page last updated October 29, 2025

Study Website: HERO Research Program
ClinicalTrials.gov#: NCT04342806
Study Design: Other, Registry and Intervention Trial
PCORnet Infrastructure: Single IRB, Patient partners or engagement
Principal Investigator: Adrian Hernandez
Institution: Duke Clinical Research Institute
PCORnet® Network Partner: The Coordinating Center for PCORnet®
Funder: Patient-Centered Outcomes Research Institute (PCORI); (Project webpage)
Funding Date: 2020
Study Duration: 2020 – 2022
Participating PCORnet® Clinical Research Networks: GPC, INSIGHT, OneFlorida+, PaTH, PEDSnet, REACHnet, STAR
Therapeutic Area: Infectious Disease
Condition: Health Care Worker (HCW); COVID-19
Age Range: 18 Years and older (Adult, Older Adult)
Status: Completed

Research Question(s): Can a research registry of people working in healthcare help to answer important questions about the COVID-19 pandemic on medications, vaccines and healthcare worker well-being?

Primary Publication(s):

Friedland A, Hernandez AF, Anstrom KJ, et al. Design of healthcare worker exposure response and outcomes (HERO) research platform. Contemp Clin Trials, 2021; 109:106525. doi.org/10.1016/j.cct.2021.106525

Naggie S, Milstone A, Castro M, et al. Hydroxychloroquine for pre-exposure prophylaxis of COVID-19 in health care workers: a randomized, multicenter, placebo-controlled trial (HERO-HCQ). Medrxiv, 2021. doi.org/10.1101/2021.08.19.21262275

Semantic Data Quality Standards for Multi-Center Clinical Research Studies and Networks

Posted on by Jodi Snare

Page last updated May 11, 2026

Study Design: Other, Methods to improve study design, methods to support data research networks
PCORnet Infrastructure: Common Data Model (CDM), Single IRB, Patient partners or engagement, Clinical Research Collaboration Agreement
Principal Investigator: L. Charles Bailey
Institution: The Children's Hospital of Philadelphia
PCORnet® Network Partner: PEDSnet
Funder: Patient-Centered Outcomes Research Institute (PCORI); (Project webpage)
Funding Date: 2021
Study Duration: 2021 – 2026
Participating PCORnet® Clinical Research Networks: PEDSnet
Therapeutic Area: Data Science
Condition: Data quality assessment, data quality analysis, data quality reporting, standards development
Status: Active, not recruiting

Research Question(s):

  1. Can we find ways to more accurately describe how suitable data are to answer a specific research question?
  2. What are the tools that can be used across studies to consistently describe whether the data are high quality?

Primary Publication(s):

Razzaghi H, Dickinson K, Wieand K, et al. A multifaceted approach to advancing data quality and fitness standards in multi-institutional networks. J Am Med Inform Assoc. 2025;ocaf181. doi:10.1093/jamia/ocaf181

Razzaghi H, Wieand K, Dickinson KL, et al. Beyond missingness: systematizing methods for comprehensive data fitness assessment in clinical research. J Med Internet Res. 2026;28(1):e76398. Published April 14, 2026.
doi.org/10.2196/76398