PCORI

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 April 14, 2026

Study Website: https://contemp-icd-study.org/
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 – 2031
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

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?

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?

REducing future fractureS and improving ouTcOmes of fRagility fracture (RESTORE)

Posted on by Jodi Snare

Page last updated August 22, 2025

ClinicalTrials.gov#: NCT06455085
Study Design: Intervention Trial
PCORnet Infrastructure: Common Data Model (CDM), Single IRB, Patient partners or engagement
Principal Investigator: Kenneth Saag
Institution: University of Alabama at Birmingham
PCORnet® Network Partner: OneFlorida+
Funder: Patient-Centered Outcomes Research Institute (PCORI); (Project webpage)
Funding Date: 2023
Study Duration: 2024 - 2029
Participating PCORnet® Clinical Research Networks: GPC, INSIGHT, OneFlorida+, PaTH, REACHnet, STAR
Therapeutic Area: Healthcare Delivery
Status: Recruiting

Research Question(s): For adults 50 and older who have had a recent fracture, can a Fracture Liaison Service that includes a patient navigator, access to a bone health provider, and increased use of bone-strengthen medications help prevent future fractures and improve quality of life?

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 April 14, 2026

 

Study Design: Other, Development and initial validation of a PCOR engagement tool
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
Condition: Other; Science of Engagement Award to develop and validate an engagement tool on engagement quality and selected outcomes
Age Range: PCORI lead investigators and/or those who manage PCORI projects
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?

Greenlight Plus Study: A Randomized Study of Approaches to Early Childhood Obesity Prevention

Posted on by Jodi Snare

Page last updated April 14, 2026

Study Website: https://www.greenlight-program.org/
ClinicalTrials.gov#: NCT04042467
Study Design: Intervention Trial
PCORnet Infrastructure (Phase 1): Common Data Model (CDM), Single IRB, Patient partners or engagement
PCORnet Infrastructure (Phase 2): Single IRB, Patient partners or engagement
Principal Investigator: Bill Heerman
Institution: Vanderbilt University Medical Center
PCORnet® Network Partner: STAR
Funder: Patient-Centered Outcomes Research Institute (PCORI); (Project webpage)
Funding Date (Phase 1): 2018
Study Duration (Phase 1): 2019 - 2025
Funding Date (Phase 2): 2025
Study Duration (Phase 2): 2025 - 2031
Participating PCORnet® Clinical Research Networks: INSIGHT, OneFlorida+, PaTH, STAR
Therapeutic Area: Metabolic Disorders
Condition: Behavior, Health; Child Obesity
Status (Phase 1): Active, not recruiting
Status (Phase 2): Not yet recruiting

Research Question(s):
The research team is recruiting 900 English- and Spanish-speaking parent-infant pairs from six primary care clinics. The team is assigning the pairs by chance to receive either Greenlight or Greenlight Plus for two years. At the start of the study and throughout the child's first two years of life, the team is interviewing families and reviewing medical records to see how each baby is growing. The team wants to know how Greenlight and Greenlight Plus compare in promoting healthy weight gain for different groups based on language, race, ethnicity, and health literacy.

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