Completed

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-TOGETHER: A Safety Surveillance Study of Post- Vaccination Events of Interest among People Vaccinated Against COVID-19

Posted on by Jodi Snare

Page last updated September 2, 2025

ClinicalTrials.gov#: NCT04342806
Study Design: Prospective Observational Study
PCORnet Infrastructure: Single IRB, Patient partners or engagement
Principal Investigator: Emily O'Brien
Institution: Duke Clinical Research Institute
PCORnet® Network Partner: The Coordinating Center for PCORnet®
Funder: Pfizer
Funding Date: 2020
Study Duration: 2020 – 2022
Participating PCORnet® Clinical Research Networks: GPC, OneFlorida+, PaTH, REACHnet, STAR, The Coordinating Center for PCORnet®
Therapeutic Area: Infectious Disease
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?

Characterizing the ILD (interstitial lung disease) Care Continuum Using Real World Evidence

Posted on by Jodi Snare

Page last updated September 10, 2025

Study Design: Retrospective Observational Study
PCORnet Infrastructure: Common Data Model (CDM), Patient partners or engagement
Principal Investigator: Aparna Swaminathan
Institution: Duke Clinical Research Institute
PCORnet® Network Partner: The Coordinating Center for PCORnet®
Funder: Genentech
Funding Date: 2022
Study Duration: 2022 – 2024
Participating PCORnet® Clinical Research Networks: GPC, INSIGHT, PaTH, STAR
Therapeutic Area: Pulmonology
Condition: Idiopathic Pulmonary Fibrosis (IPF)
Age Range: 18 Years and older (Adult,  Older Adult )
Status: Completed

Research Question(s): Idiopathic pulmonary fibrosis (IPF) is a progressive fibrotic lung disease, affecting over 3 million individuals worldwide and causing progressive lung function deterioration and death within a median of 3-5 years after diagnosis. This project will help to characterize the interstitial lung disease (ILD) patient care continuum across ILD subtypes.

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

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

Aspirin Dosing: A Patient-Centric Trial Assessing Benefits and Long-term (ADAPTABLE)

Posted on by Jodi Snare

Page last updated October 29, 2025

ClinicalTrials.gov#: NCT02697916
Study Design: Intervention Trial
PCORnet Infrastructure: Common Data Model (CDM), Single IRB, Patient partners or engagement
Principal Investigator: Matt Roe, then William Jones
Institution: Duke University
PCORnet® Network Partner: STAR
Funder: Patient-Centered Outcomes Research Institute (PCORI); (Project webpage)
Funding Date: 2015
Study Duration: 2016 – 2020
Participating PCORnet® Clinical Research Networks: GPC, INSIGHT, OneFlorida+, PaTH, REACHnet, STAR
Therapeutic Area: Cardiovascular
Condition: Atherosclerotic Cardiovascular Disease (ASCVD)
Age Range: 18 Years and older (Adult, Older Adult)
Status: Completed

Research Question(s):
Which dose of daily aspirin offers the right balance of effectiveness and minimal risk of bleeding? Can PCORnet be used to find the answer using a clinical trial model wherein patients are drivers of engagement?

Primary Publication(s):

Marquis-Gravel G, Roe MT, Robertson HR, et al. Rationale and design of the apsirin dosing- a patient-centric trial assessing benefits and long-term effectiveness (ADAPTABLE) Trial. JAMA Cardiol, 2020; 5(5): 598-607. doi:10.1001/jamacardio.2020.0116

Jones WS, Mulder H, Wruck LM, et al. Comparative effectiveness of aspirin dosing in cardiovascular disease. N Engl J Med, 2021; 384(21); 1981-1990. doi:10.1056/NEJMoa2102137

Characterization of Patients with Heart Failure and Patients with Atrial Fibrillation and Atrial Flutter in PCORnet Data

Posted on by Jodi Snare

Page last updated October 29, 2025

Study Design: Retrospective Observational Study
PCORnet Infrastructure: Common Data Model (CDM), Patient partners or engagement
Principal Investigator: Manesh Patel
Institution: Duke Clinical Research Institute
PCORnet® Network Partner: The Coordinating Center for PCORnet®
Funder: Bayer
Funding Date: 2020
Study Duration: 2020 – 2025
Participating PCORnet® Clinical Research Networks: GPC, STAR
Therapeutic Area: Cardiovascular
Condition: Congestive Heart Failure
Age Range: 18 Years and older (Adult,  Older Adult )
Status: Completed

Research Question(s):
What is the occurrence of vascular, bleeding, or other events in Atrial Fibrillation or Atrial Flutter Patients patients?

Primary Publication(s):

Rao VN, Cyr D, Wruck L, et al. Electronic health record characterization and outcomes of heart failure with preserved ejection fraction. American Heart Journal. 2023. Vol263, Pg 1-14, ISSN 0002-8703. doi.org/10.1016/j.ahj.2023.04.013

Using PCORnet to Compare Blood Pressure Control Strategies

Posted on by Jodi Snare

Page last updated October 29, 2025

ClinicalTrials.gov#: NCT03796689
Study Design: Retrospective Observational Study
PCORnet Infrastructure: Common Data Model (CDM), Patient partners or engagement
Principal Investigator: Mark Pletcher
Institution: University of California, San Francisco
PCORnet® Network Partner: REACHnet
Funder: Patient-Centered Outcomes Research Institute (PCORI); (Project webpage)
Funding Date: 2018
Study Duration: 2018 – 2023
Participating PCORnet® Clinical Research Networks: ADVANCE, GPC, INSIGHT, OneFlorida+, PaTH, REACHnet, STAR
Therapeutic Area: Cardiovascular
Condition: Hypertension
Age Range: 18 Years and older (Adult,  Older Adult)
Status: Completed

Research Question(s):
How well are clinics and patients controlling blood pressure, and would new programs or technologies help improve blood pressure control?

Aim 1: BP Track
The research team established a BP control surveillance system.

Aim 2: BP Map
The research team tested a program to improve the quality of BP care at clinics. The research team compared clinics using the program with staff coaching versus without staff coaching. They also compared clinics that did and didn’t use the program.

Aim 3: BP Home
The research team compared patients who used a home BP monitor with and without a smartphone app.

Primary Publication(s):

Cooper-DeHoff RM, Fontil V, Carton T, et al. Tracking blood pressure control performance and process metrics in 25 US health systems: The PCORnet Blood Pressure Control Laboratory. J Am Heart Assoc, 2021; 10(21): e022224. doi:10.1161/JAHA.121.022224

Empagliflozin Diabetic Kidney Disease (Empa DKD)

Posted on by Jodi Snare

Page last updated February 5, 2026

ClinicalTrials.gov#: NCT05465317
Study Design: Retrospective Observational Study
PCORnet Infrastructure: Common Data Model (CDM), Patient partners or engagement
Principal Investigator: Neha Pagidipati
Institution: Duke Clinical Research Institute
PCORnet® Network Partner: The Coordinating Center for PCORnet®
Funder: Boehringer Ingelheim
Funding Date: 2021
Study Duration: 2021 – 2024
Participating PCORnet® Clinical Research Networks: OneFlorida+, PaTH, REACHnet, STAR
Therapeutic Area: Nephrology
Age Range: 18 Years and older (Adult, Older Adult)
Status: Completed

Research Question(s):

  1. Can we better understand why patients with type-2 diabetes may not receive guideline-recommended screening for diabetic kidney disease?
  2. Which medications may be most effective at improving kidney and heart outcomes in patients with and without type-2 diabetes?

Primary Publication(s):
Edmonston, D, Mulder, H, Lydon, E. et al. Kidney and Cardiovascular Effectiveness of SGLT2 Inhibitors vs GLP-1 Receptor Agonists in Type 2 Diabetes. JACC. 2024 Aug, 84 (8) 696–708. doi.org/10.1016/j.jacc.2024.06.016

Edmonston D, Mulder H, Lydon E, et al. Kidney and Cardiovascular Effectiveness of Empagliflozin Compared With Dipeptidyl Peptidase-4 Inhibitors in Patients With Type 2 Diabetes. Am J Cardiol. 2024;221:52-63. doi:10.1016/j.amjcard.2024.04.011