Publication

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

Comparative Effectiveness of Prophylactic ICD versus Non-ICD Therapy in Contemporary Heart Failure Patients with a Low Risk for Arrhythmic Death (CONTEMP-ICD)

Posted on by Jodi Snare

Page last updated May 11, 2026

ClinicalTrials.gov#: NCT06543446
Study Design: Intervention Trial
PCORnet Infrastructure: Common Data Model (CDM), Single IRB, Patient partners or engagement
Principal Investigator: Ilan Goldenberg
Institution: University of Rochester
Funder: Patient-Centered Outcomes Research Institute (PCORI); (Project webpage)
Funding Date: 2024
Study Duration: 2024 – 2026
Participating PCORnet® Clinical Research Networks: GPC, PaTH
Therapeutic Area: Cardiovascular
Status: Terminated

Research Question(s):
Is implantable cardioverter-defibrillator beneficial in eligible heart failure patients with low arrhythmia risk?

Primary Publication(s):

Goldenberg I, Zareba W, Ezekowitz JA, et al. Rationale and design of the comparative effectiveness of ICD vs non-ICD therapy in contemporary heart failure patients at a low risk for arrhythmic death (CONTEMP-ICD) trial. Am Heart J. 2026;291:162-174. doi:10.1016/j.ahj.2025.08.020

Goldenberg I, Ezekowitz J, Albert C, et al. Reassessing the need for primary prevention implantable cardioverter defibrillators in contemporary patients with heart failure. Heart Rhythm. 2025;22(4):1040-1051. doi:10.1016/j.hrthm.2024.10.078

A Clinical Trial Readiness Study of Patient Reported Outcome Measures in TTP (THINK-TTP)

Posted on by Jodi Snare

Page last updated May 11, 2026

Study Design: Prospective Observational Study
PCORnet Infrastructure: Single IRB, Patient partners or engagement
Principal Investigator: Toyosi Onwuemene and Theresa Coles
Institution: Duke University
PCORnet® Network Partner: STAR
Funder: Federal (NIH/NCATS)
Funding Date: 2024
Study Duration: 2024 – 2026
Participating PCORnet® Clinical Research Networks: GPC, STAR
Therapeutic Area: Rare Diseases
Status: Active, not recruiting

Research Question(s): Can we develop a consensus-based strategy that comprehensively measures TTP-associated cognitive function impacts from the patient perspective?

Primary Publication(s):

Coles T, Mkumba L, Thompson D, et al. The THINK-TTP Study for Assessing Cognitive Function in Clinical Trials: A Qualitative Research Protocol. International Journal of Qualitative Methods. 2026;25:16094069261429876.
doi:10.1177/16094069261429876

Behavioral Economic and Staffing Strategies to Increase Adoption of the ABCDEF Bundle in the ICU (BEST-ICU)

Posted on by Jodi Snare

Page last updated May 11, 2026

ClinicalTrials.gov#: NCT06184945
Study Design: Intervention Trial
PCORnet Infrastructure: Common Data Model (CDM), Single IRB, Patient partners or engagement
Principal Investigator: Michele Balas
Institution: University of Nebraska Medical Center
PCORnet® Network Partner: GPC
Funder: Federal (NIH NHLBI & NINR)
Funding Date: 2024
Study Duration: 2024 - 2028
Participating PCORnet® Clinical Research Networks: GPC, PaTH
Therapeutic Area: Healthcare Delivery
Status: Active, not recruiting

Research Question(s): What is the best way to encourage ICU clinicians to consistently and completely implement the ABCDEF Bundle in their care of mechanically ventilated patients?

Primary Publication(s):

Conte M, Schlaeger J, Marsolo K, et al. Computable phenotypes for research using real-world data: experiences from the NIH Pragmatic Trials Collaboratory. J Am Med Inform Assoc. In review.

Vasilevskis, Eduard E., Jungyoon Kim, Christopher Wichman, Ronnie Horner, James R. Campbell, Carol Reynolds Geary, Justin Birge et al. "Behavioral Economic and Staffing Strategies To Increase Adoption of the ABCDEF Bundle in the Intensive Care Unit (BEST ICU): study protocol for a multi-site stepped-wedge cluster randomized controlled trial in the USA." Trials (2025). doi.org/10.1186/s13063-025-09331-6

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

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

PANDA – MSD: Predictive Analytics via Networked Distributed Algorithms for Multi – System Diseases

Posted on by Jodi Snare

Page last updated May 11, 2026

Study Design: Retrospective Observational Study
PCORnet Infrastructure: Common Data Model (CDM), Patient partners or engagement
Principal Investigator: Jiang Bian
Institution: University of Florida and University of Florida Health
PCORnet® Network Partner: OneFlorida+
Funder: Federal (NIH)
Funding Date: 2023
Study Duration: 2023 – 2026
Participating PCORnet® Clinical Research Networks: OneFlorida+
Therapeutic Area: Rare Diseases
Condition: Granulomatosis with Polyangiitis (GPA); Psoriatic Arthritis (PsA)
Age Range: 18 Years and older (Adult, Older Adult )
Status: Active, not recruiting

Research Question(s):
Can the use of EHR data develop predictive tools to assist healthcare providers in reaching earlier diagnoses and interventions, and improve the diagnostic journey and clinical outcomes of patients with rare diseases?

Primary Publication(s):

Jian X, Zhang D, Yu Z, et al. Leveraging undecided cases in chart-reviewed phenotypes to enhance EHR-based association studies. J Biomed Inform. 2025;166:104839. doi:10.1016/j.jbi.2025.104839

Tong J, Li L, Reps JM, et al. Advancing Interpretable Regression Analysis for Binary Data: A Novel Distributed Algorithm Approach. Stat Med. 2024;43(29):5573-5582. doi:10.1002/sim.10250

Wu Q, Tong J, Zhang B, et al. Real-World Effectiveness of BNT162b2 Against Infection and Severe Diseases in Children and Adolescents. Ann Intern Med. 2024;177(2):165-176. doi:10.7326/M23-1754

Understanding How Antibiotic Use Affects Childhood Obesity and Growth

Posted on by Jodi Snare

Page last updated February 4, 2026

ClinicalTrials.gov#: NCT02744846
Study Design: Retrospective Observational Study
PCORnet Infrastructure: Common Data Model (CDM), Patient partners or engagement
Principal Investigator: Jason P. Block
Institution: Harvard Pilgrim Health Care
PCORnet® Network Partner: Other
Funder: Patient-Centered Outcomes Research Institute (PCORI); (Project webpage)
Funding Date: 2015
Study Duration: 2015 - 2018
Participating PCORnet® Clinical Research Networks: ADVANCE, GPC, INSIGHT, OneFlorida+, PEDSnet, REACHnet, STAR
Therapeutic Area: Metabolic Disorders
Age Range: up to 11 Years (Child)
Status: Completed

Research Question(s):
How does antibiotic use before age two affect weight and growth in children?

Primary Publication(s):

Block JP, Bailey LC, Gillman M, et al. Early Antibiotic Exposure and Weight Outcomes in Young Children. Pediatrics, 2018; 142(6), p.e20180290. doi:10.1542/peds.2018-0290

Heerman WJ, Daley MF, Boone-Heinonen J, et al. Maternal antibiotic use during pregnancy and childhood obesity at age 5 years. Int J Obes (Lond). 2019;43(6):1202-1209. doi:10.1038/s41366-018-0316-6

Comparing the Benefits and Harms of Three Types of Weight Loss Surgery — The PCORnet® Bariatric Study

Posted on by Jodi Snare

Page last updated November 12, 2025

Study Website: The PCORnet Bariatric Study (PBS)
ClinicalTrials.gov#: NCT02741674
Study Design: Retrospective Observational Study
PCORnet Infrastructure: Common Data Model (CDM), Patient partners or engagement
Principal Investigator: David Arterburn
Institution: Kaiser Permanente Washington Health Research Institute
PCORnet® Network Partner: Legacy PCORnet Partner
Funder: Patient-Centered Outcomes Research Institute (PCORI); (Project webpage)
Funding Date: 2015
Study Duration: 2016 – 2018
Participating PCORnet® Clinical Research Networks: GPC, INSIGHT, OneFlorida+, PaTH, PEDSnet, REACHnet, STAR
Therapeutic Area: Metabolic Disorders
Condition: Bariatrics, Body Weight, Diabetes, Gastric Bypass, Obesity
Age Range: up to 79 Years (Child,  Adult,  Older Adult)
Status: Completed

Research Question(s):
We don’t know much about the long-term effectiveness of bariatric interventions. Can we use PCORnet to compare compare weight loss and safety among three popular bariatric procedures?

Primary Publication(s):

Inge TH, Coley RY., Bazzano LA,. et al. Comparative effectiveness of bariatric procedures among adolescents: the PCORnet bariatric study. SOARD, 2018, 14(9):1374-1386. doi.org/10.1016/j.soard.2018.04.002

McTigue KM, Wellman R, Nauman E, et al. PCORnet Bariatric Study Collaborative. Comparing the 5-Year Diabetes Outcomes of Sleeve Gastrectomy and Gastric Bypass: The National Patient-Centered Clinical Research Network (PCORNet) Bariatric Study. JAMA Surg. 2020;155(5):e200087. doi:10.1001/jamasurg.2020.0087

Cardiovascular Multicenter Observational Investigation of Lipid Care in the United States-2 (cvMOBIUS2)

Posted on by Jodi Snare

Page last updated May 11, 2026

Study Design: Prospective Observational Study
PCORnet Infrastructure: Common Data Model (CDM), Patient partners or engagement
Principal Investigators: Eric Peterson and Ann Marie Navar
Institution: Duke Clinical Research Institute
PCORnet® Network Partner: The Coordinating Center for PCORnet®
Funder: Industry (Amgen)
Funding Date: 2021
Study Duration: 2021 - 2026
Participating PCORnet® Clinical Research Networks: GPC, OneFlorida+, PaTH, REACHnet, STAR
Therapeutic Area: Cardiovascular
Condition: Atherosclerotic Cardiovascular Disease (ASCVD)
Age Range: 18 Years and older (Adult, Older Adult)
Study Status: Active, not recruiting

Research Question:

Can we reduce the number of people who die from atherosclerotic cardiovascular disease (ASCVD) related deaths by using PCSK9 medicines to lower their cholesterol?

Primary Publication(s):

Navar AM, Shah NP, Shrader P, et al. Achievement of LDL-C <55 mg/dL among US adults: Findings from the cvMOBIUS2 registry. Am Heart J. 2025;279:107-117. doi:10.1016/j.ahj.2024.06.012

Shoji S, Shah NP, Shrader P, et al. Achievement of guideline-based lipid goals among very-high-risk patients with atherosclerotic cardiovascular disease and type 2 diabetes: results in 213,380 individuals from the cvMOBIUS2 registry. Am J Prev Cardiol. 2024;21:100921. Published 2024 Dec 21. doi:10.1016/j.ajpc.2024.100921

Shah NP, Peterson ED, Shrader P, et al. Variation in Lipid Management for Atherosclerotic Cardiovascular Disease Across US Health Systems. Circ Popul Health Outcomes. Published online February 20, 2026. doi:10.1161/CIRCOUTCOMES.125.012622