Retrospective Observational

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 May 11, 2026

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: Industry (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

PCORnet® Study of Post-Acute Sequelae of SARS-CoV-2 Infection in Adults (PCORnetPASC)

Posted on by Jodi Snare

Page last updated May 11, 2026

Study Website: RECOVERCOVID
ClinicalTrials.gov#: NCT05292274
Study Design: Retrospective Observational Study
PCORnet Infrastructure: Common Data Model (CDM), Single IRB
Principal Investigator: Rainu Kaushal
Institution: Weill Cornell Medicine
PCORnet® Network Partner: INSIGHT
Funder: Federal (NIH)
Funding Date: 2022
Study Duration: 2022 - 2026
Participating PCORnet® Clinical Research Networks: GPC, INSIGHT, OneFlorida+, PaTH, REACHnet, STAR
Therapeutic Area: Infectious Disease
Condition: COVID-19; SARS CoV 2 Infection
Age Range: 18 Years and older (Adult, Older Adult)
Status: Active, not recruiting

Research Question(s):

  1. What are the long term health effects of COVID-19 after a person has recovered from infection?
  2. How can we better detect, predict, and treat these health effects and prevent future infection?

Primary Publication(s):

Zang C, Zhang Y, Xu J, et al. Data-driven analysis to understand long COVID using electronic health records from the RECOVER initiative. Nature Communications. 2023;14(1):1948. doi.org/10.1038/s41467-023-37653-z

Zhang H, Zang C, Xu Z, et al. Data-driven identification of post-acute SARS-CoV-2 infection subphenotypes. Nat Med. 2023;29:226-235. doi.org/10.1038/s41591-022-02116-3

Comparative Effectiveness of Palliative Surgery vs 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

Empagliflozin Diabetic Kidney Disease (Empa DKD)

Posted on by Jodi Snare

Page last updated May 11, 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: Industry (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

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?

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

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

Posted on by Jodi Snare

Page last updated April 2, 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
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+, PaTH, PEDSnet, 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?

Estimating the Burden of Nonalcoholic Steatohepatitis Using a Multistate Electronic Health Record Data Network

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: Kathleen McTigue
Institution: University of Pittsburgh School of Medicine
PCORnet® Network Partner: PaTH
Funder: Industry (Pfizer)
Funding Date: 2020
Study Duration: 2020 – 2023
Participating PCORnet® Clinical Research Networks: OneFlorida+, PaTH, REACHnet
Therapeutic Area: Hepatology
Condition: Non-alcoholic Fatty Liver Disease (NAFLD)
Age Range:

Research Question(s):

  1. How do patients with non-alcoholic steatohepatitis (NASH) or non-alcoholic fatty liver disease (NAFLD) compare with those who do not have these diagnoses?
  2. How is risk for liver fibrosis (calculated from 4 validated scores) distributed among patients with and without diagnoses for NASH or NAFLD?