PCORI

A Comparative Effectiveness Study of Oral Medications Used for Migraine Prevention: The SPT Comparison Study

Posted on by Jodi Snare

Page last updated October 29, 2025

Study Design: Intervention Trial
PCORnet Infrastructure: Single IRB, Patient partners or engagement
Principal Investigator: Todd Schwedt
Institution: Mayo Clinic
PCORnet® Network Partner: STAR
Funder: Patient-Centered Outcomes Research Institute (PCORI); (Project webpage)
Funding Date: 2024
Study Duration: 2025 – 2029
Participating PCORnet® Clinical Research Networks: GPC, One Florida+, PaTH, STAR
Therapeutic Area: Neurology
Status: Recruiting

Research Question(s):

Is a newer oral migraine preventive medication (atogepant) more effective for treating migraines than two older medications (propranolol, topiramate), each of which is commonly used in clinical practice and has strong levels of evidence supporting their efficacy?

Preserving Kidney Function in Children with Chronic Kidney Disease (PRESERVE)

Posted on by Jodi Snare

Page last updated July 1, 2026

ClinicalTrials.gov#: NCT05169411
Study Design: Retrospective Observational Study
PCORnet Infrastructure: Common Data Model (CDM), Single IRB, Patient partners or engagement
Principal Investigator: Christopher Forrest and Michelle Denburg
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 – 2024
Participating PCORnet® Clinical Research Networks: GPC, OneFlorida+, PEDSnet, PaTH, STAR
Therapeutic Area: Nephrology, Rare Diseases
Condition: Chronic Kidney Disease Stage 2; Chronic Kidney Disease Stage 3; Pediatric Kidney Disease
Age Range: 1 Year to 17 Years (Child)
Status: Completed

Research Question(s):

  1. Which blood pressure monitoring strategies, urine protein monitoring strategies, and blood pressure medication strategies are most effective in preserving kidney function in pediatric patients with Chronic Kidney Disease (CKD), and what is the lived experience of families and patients living with pediatric CKD?

Primary Publication(s):

Denburg MR, Goodwin Davies AJ, Maltenfort MG, et al. Comparative Effectiveness of Antihypertensive Medications in Children With Chronic Kidney Disease. JAMA Pediatr. 2026;180(5):546–555. doi:10.1001/jamapediatrics.2026.0207

Tube Size Randomized Trial during Emergency Tracheal Intubation

Posted on by Jodi Snare

Page last updated November 07, 2025

Study Design: Intervention Trial
PCORnet Infrastructure: Single IRB, Patient partners or engagement, Clinical Research
Collaboration Agreement
Principal Investigator: Jonathan Casey
Institution: Vanderbilt University Medical Center
PCORnet® Network Partner: STAR
Funder: Patient-Centered Outcomes Research Institute (PCORI); (Project webpage)
Funding Date: 2024
Study Duration: 2025 – 2029
Participating PCORnet® Clinical Research Networks: ADVANCE, OneFlorida+, STAR
Therapeutic Area: Pulmonology
Status: Enrolling by invitation

Research Question(s):

  1. Do smaller breathing tubes prevent long-term problems with breathing, speaking and swallowing?
  2. Are smaller breathing tubes as good as larger breathing tubes for getting patients through their illness and off the breathing machine?

Comparative Effectiveness of Carvedilol versus Metoprolol Succinate in Heart Failure Patients with an Implantable Cardioverter Defibrillator

Posted on by Jodi Snare

Page last updated August 22, 2025

ClinicalTrials.gov#: NCT06964464
Study Design: Intervention Trial
PCORnet Infrastructure: Common Data Model (CDM), Single IRB, Patient partners or engagement
Principal Investigator: Mehmet Aktas
Institution: University of Rochester
PCORnet® Network Partner: External
Funder: Patient-Centered Outcomes Research Institute (PCORI); (Project webpage)
Funding Date: 2024
Study Duration: 2025 – 2031
Participating PCORnet® Clinical Research Networks: GPC, INSIGHT, PaTH, REACHnet
Therapeutic Area: Cardiovascular
Status: Recruiting

Research Question(s):
In this study, we are comparing two commonly used beta-blockers-carvedilol and metoprolol succinate-in people who have heart failure and an implanted defibrillator. We want to find out if carvedilol is more effective than metoprolol succinate at preventing dangerous heart rhythm problems, hospitalizations for heart issues, and deaths caused by heart disease.

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

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 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?