PCORI

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

Comparative Effectiveness of Epilepsy Surgery Versus Additional Anti-Seizure Medications for Lennox-Gastaut Syndrome

Posted on by Jodi Snare

Page last updated November 12, 2025

ClinicalTrials.gov#: NCT05374824
Study Design: Retrospective Observational Study
PCORnet Infrastructure: Common Data Model (CDM), Patient partners or engagement
Principal Investigator: Sandi Lam
Institution: Lurie Children's Hospital
PCORnet® Network Partner: PEDSnet
Funder: Patient-Centered Outcomes Research Institute (PCORI); (Project webpage)
Funding Date: 2021
Study Duration: 2022 – 2025
Participating PCORnet® Clinical Research Networks: GPC, OneFlorida+, PaTH, PEDSnet, STAR
Therapeutic Area: Neurology
Condition: Lennox-Gastaut Syndrome
Age Range: up to 25 Years (Child,  Adult)
Status: Recruiting

Research Question(s):

  1. Which treatment options are most likely to improve important clinical outcomes in my child (or patient) with LGS?
  2. My child has hundreds of seizures a week, and multiple different drugs have failed to get her seizures under control. What is the best possible next step?

Primary Publication(s):

Lam S, Rosenman M, Dixon-Salazar D, et al. Comparative effectiveness of epilepsy surgery versus additional anti-seizure medications for Lennox-Gastaut syndrome: study protocol for a multicenter, mixed-methods study. Front Neurol 2025;16:1569551. doi: 10.3389/fneur.2025.1569551

Bliss ND, Patel AD, Dixon-Salazar T, et al. Patient family engagement and partnership: Pilot survey results in assessing behavior, communication, and quality of life in children with Lennox-Gastaut syndrome and other drug-resistant epilepsy. Epilepsy Behav 2023;148:109451. doi: 10.1016/j.yebeh.2023.109451

Votoupal M, Muller R, Patel AD, et al. Navigating the diagnosis: A survey on caregivers' journeys to Lennox-Gastaut syndrome. Epilepsy Behav 2025;171:110600. doi: 10.1016/j.yebeh.2025.110600

PRECIDENTD – PREvention of CardIovascular and DiabEtic kidNey disease in Type 2 Diabetes

Posted on by Jodi Snare

Page last updated November 5, 2026

Study Website: PRECIDENTD
ClinicalTrials.gov#: NCT05390892
Study Design: Intervention Trial
PCORnet Infrastructure: Common Data Model (CDM), Single IRB, Patient partners or engagement
Principal Investigator: Brendan Everett
Institution: Brigham and Women's Hospital
Funder: Patient-Centered Outcomes Research Institute (PCORI); (Project webpage)
Funding Date: 2021
Study Duration: 2022 – 2028
Participating PCORnet® Clinical Research Networks: ADVANCE, GPC, INSIGHT, OneFlorida+, PaTH, STAR
Therapeutic Area: Cardiovascular, Endocrinology
Condition: Type2Diabetes; Atherosclerotic Cardiovascular Disease (ASCVD)
Age Range: 40 Years to 80 Years (Adult, Older Adult)
Status: Recruiting

Research Question(s):

  1. In patients with type 2 diabetes, are SGLT2 inhibitors or GLP-1 recent agonists better for preventing heart attack, stroke, blood vessel disease, heart failure, kidney disease, and death?
  2. Is combination therapy with both medication classes better than one therapy alone?

Primary Publication(s):

Nelson LA, Bergner EM, Adler A, et al. Development and value of a centralized text message-based tracking and support program for the PRECIDENTD study. Med Care. 2026;64(2 Suppl 3):S242-S250. doi:10.1097/MLR.0000000000002246.

Wexler DJ, Mayberry LS, Nelson LA, et al. Dual versus monotherapy with SGLT2 inhibitor and GLP-1 receptor agonist: PRECIDENTD pragmatic randomized trial. Am Heart J. 2026;294:107332. doi:10.1016/j.ahj.2025.107332.

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

Utilizing PCORnet to support transition from pediatric to adult centered care and reduce gaps in recommended care in patients with congenital heart disease

Posted on by Jodi Snare

Page last updated February 4, 2026

ClinicalTrials.gov#: NCT05185232
Study Design: Retrospective Observational
PCORnet Infrastructure: Common Data Model (CDM), Single IRB, Patient partners or engagement
Principal Investigator: Thomas Carton and Anitha John
Institution: Louisiana Public Health Institute (LPHI)
PCORnet® Network Partner: REACHnet
Funder: Patient-Centered Outcomes Research Institute (PCORI); (project webpage)
Funding Date: 2021
Study Duration: 2021 – 2024
Participating PCORnet® Clinical Research Networks: INSIGHT, OneFlorida+, PEDSnet, REACHnet
Therapeutic Area: Cardiovascular, Rare Diseases
Condition: Congenital Heart Disease; Comorbidities and Coexisting Conditions
Age Range: 18 Years and older (Adult,  Older Adult)
Status: Completed

Research Question(s):

  1. How does receiving current recommended care affect long-term outcomes and healthcare needs amongst the numerous rare disease subtypes of congenital heart defects?
  2. What factors are associated with gaps in recommended care?
  3. Do patients report feeling better when they remain in specialty care?

Comparing patient-reported impact of COVID-19 shelter-in-place policies and access to containment and mitigation strategies, overall and in vulnerable populations

Posted on by Jodi Snare

Page last updated October 29, 2025

Study Website: COVID-19 Citizen Science
ClinicalTrials.gov#: NCT05548803
Study Design: Prospective Observational Study
PCORnet Infrastructure: Common Data Model (CDM), Single IRB, 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: 2020
Study Duration: 2020 – 2023
Participating PCORnet® Clinical Research Networks: GPC, INSIGHT, REACHnet
Therapeutic Area: Infectious Disease
Condition: COVID-19
Age Range: 18 Years and older (Adult, Older Adult)
Status: Completed

Research Question(s):

  1. What is the comparative impact of different shelter-in-place/reopening policies, overall and in vulnerable populations, on patient-reported financial insecurity, mental health, and other subjective outcomes important to patients?
  2. What is the comparative effectiveness of county-level containment and mitigation strategies at achieving timely access to testing, healthcare, information, and contact tracing, overall and in vulnerable populations?
  3. What is the comparative accuracy of different algorithms designed to predict risk of infection and severe COVID-19 among patients with symptoms, overall and in vulnerable populations?

Primary Publication(s):

Beatty AL, Peyser ND, Butcher XE, et al. The COVID-19 citizen science study: protocol for a longitudinal digital health cohort. JMIR Res Protoc, 2021; 10(8):e28169. doi:10.2196/28169

Neuroendocrine Tumors – Patient Reported Outcomes (NET-PRO)

Posted on by Jodi Snare

Page last updated November 5, 2026

ClinicalTrials.gov#: NCT05064150
Study Design: Prospective Observational Study
PCORnet Infrastructure: Common Data Model (CDM), Single IRB, Patient partners or engagement
Principal Investigator: Michael O'Rorke
Institution: University of Iowa
PCORnet® Network Partner: GPC
Funder: Patient-Centered Outcomes Research Institute (PCORI), project website
Funding Date: 2021
Study Duration: 2021 – 2027
Participating PCORnet® Clinical Research Networks: GPC, OneFlorida+, Path, STAR
Therapeutic Area: Oncology, Rare Diseases
Condition: Neuroendocrine Tumors; Gastroenteropancreatic Neuroendocrine Tumor; Lung Neuroendocrine Neoplasm; Neuroendocrine Carcinoma
Age Range: 18 Years and older (Adult, Older Adult)
Status: Active, not recruiting

Research Question(s):

Which care options work, for whom, and under which circumstances in order to improve symptom management, treatment outcomes and quality of life among NET patients?

  • Common treatment combinations and their relation to disease symptoms and quality of life
  • Identification of the best ordering of treatments and relation to patient outcomes and survival
  • The impact of patient traits and tumor characteristics on treatment choice(s) and survival

Primary Publication(s):

O’Rorke M, Chrischilles E; NET-PRO Study Investigators. Making progress against rare cancers: A case study on neuroendocrine tumors. Cancer. Published online January 20, 2024. doi:10.1002/cncr.35184

O’Rorke, M.A., McDowell, B.D., Xu, T. et al. Assessing Patient Characteristics in Neuroendocrine Tumor Research: A Comparison of the NET-PRO Study to SEER Population-Based Data. Endocrine 91, 141 (2026). doi: 10.1007/s12020-026-04611-w. PMID: 42043735; PMCID: PMC13121266.

Hourcade JP, O'Rorke M, Chrischilles E, et al. Personal Health Record Software for Neuroendocrine Tumors: Patient Centered Design Approach. JMIR Hum Factors. 2025;12:e68788. Published 2025 Jun 3. doi:10.2196/68788

Provider-Targeted Behavioral Interventions to Prevent Unsafe Opioid Prescribing for Acute Non-Cancer Pain in Primary Care

Posted on by Jodi Snare

Page last updated April 14, 2026

ClinicalTrials.gov#: NCT03537573
Study Design: Intervention Trial
PCORnet Infrastructure: Common Data Model (CDM), Patient partners or engagement
Principal Investigator: Kevin Kraemer
Institution: University of Pittsburgh
PCORnet® Network Partner: PaTH
Funder: Patient-Centered Outcomes Research Institute (PCORI); (Project webpage)
Funding Date: 2017
Study Duration: 2018-2021
Participating PCORnet® Clinical Research Networks: GPC, PaTH
Therapeutic Area: Pain; Opioid use and pain
Age Range: 18 Years and older (Adult,  Older Adult)
Status: Completed

Research Question(s):

What is the comparative effectiveness of different payer or health system strategies that aim to prevent unsafe opioid prescribing while ensuring access to non-opioid methods for pain management with the goal of reducing pain and improving patient function and quality of life outcomes, while reducing patient harm?

A Patient-Centered PaTH to Addressing Diabetes

Posted on by Jodi Snare

Page last updated November 12, 2025

Study Website: The PaTH to Health: Diabetes Study
ClinicalTrials.gov#: NCT02788903
Study Design: Retrospective Observational Study
PCORnet Infrastructure: Common Data Model (CDM), Patient partners or engagement
Principal Investigator: Jennifer Kraschnewski
Institution: Penn State
PCORnet® Network Partner: PaTH
Funder: Patient-Centered Outcomes Research Institute (PCORI); (project webpage)
Funding Date: 2016
Study Duration: 2016 – 2021
Participating PCORnet® Clinical Research Networks: GPC, PaTH
Therapeutic Area: Metabolic Disorders
Condition: COVID-19; Diabetes; Obesity
Age Range: 18 Years and older (Adult, Older Adult)
Status: Completed

Research Question(s):

  1. How often is intensive behavioral therapy (IBT) being utilized in primary care and how has it impacted weight and diabetes outcomes for patients with and at-risk of type 2 diabetes?
  2. What is the impact of telemedicine utilization during the COVID-19 pandemic for patients with and at-risk of type 2 diabetes?
  3. What are demographic and clinical characteristics associated with severe COVID-19 outcomes across multiple phases of the COVID pandemic for patients with or at-risk of type 2 diabetes?

Primary Publication(s):

Kraschnewski JL, Kong L, Francis E, et al. A Patient-Centered PaTH to Address Diabetes: Protocol for a Study on the Impact of Obesity Counseling. JMIR Res Protoc. 2019 Apr 4;8(4):e12054. doi.org/10.2196/12054

Soleymani T, Lehman EB, Kong L, et al. Bariatric surgery and COVID-19 outcomes: results from the PaTH to Health: Diabetes study. Surg Obes Relat Dis. 2024;20(11):1039-1045. doi:10.1016/j.soard.2024.05.016

Biologic Abatement and Capturing Kids’ Outcomes and Flare Frequency in Juvenile Spondyloarthritis (BACK-OFF JSpA)

Posted on by Jodi Snare

Page last updated May 11, 2026

Study Website: The BACK-OFF JSpA Study
ClinicalTrials.gov#: NCT04891640
Study Design: Intervention Trial
PCORnet Infrastructure: Common Data Model (CDM), Single IRB, Patient partners or engagement
Principal Investigator: Pamela F. Weiss
Institution: The Children's Hospital of Philadelphia
PCORnet® Network Partner: PEDSnet
Funder: Patient-Centered Outcomes Research Institute (PCORI); (Project webpage)
Funding Date: 2020
Study Duration: 2021 – 2026
Participating PCORnet® Clinical Research Networks: GPC, OneFlorida+, PaTH, PEDSnet, STAR
Therapeutic Area: Autoimmune (Allergy & Immunology), Spondyloarthritis
Condition: Juvenile Spondyloarthritis
Age Range: 8 Years to 21 Years (Child,  Adult)
Status: Active, not recruiting

Research Question(s):

This trial will compare how patients with inactive spondyloarthritis on tumor necrosis factor inhibitor (TNFi) treatment respond to three treatment options that doctors currently use:

  • Continue standard TNFi medication,
  • Space out the time between usual TNFi medication doses, or
  • Stop the TNFi medication. If we can safely prolong the time between doses or completely take away TNFi therapy in this population, we may remove unnecessary medication exposure, improve patient quality of life, and lower medication costs.