Publication

The RECOVER Post-Acute Sequelae of SARS-CoV-2 (PASC) Electronic Health Record (EHR) Cohort Study

Posted on by Jodi Snare

Page last updated May 11, 2026

Study Website: RECOVERCOVID
Study Design: Retrospective Observational Study
PCORnet Infrastructure: Common Data Model (CDM), Single IRB, Patient partners or engagement
Principal Investigator: Christopher Forrest, Charles Bailey and Grace Lee
Institution: The Children's Hospital of Philadelphia
PCORnet® Network Partner: PEDSnet
Funder: Federal (NIH)
Funding Date: 2021
Study Duration: 2021 - 2025
Participating PCORnet® Clinical Research Networks: ADVANCE, GPC, PaTH, PEDSnet, STAR
Therapeutic Area: Infectious Disease
Condition: COVID-19; SARS-CoV-2 Infection
Age Range: Pediatrics 21 years and younger
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, treat these health effects and prevent future infection?

Primary Publication(s):

Forrest CB, Burrows EK, Mejias A, et al. Severity of Acute COVID-19 in Children <18 Years Old March 2020 to December 2021. Pediatrics. 2022 Apr 1;149(4):e2021055765. doi:10.1542/peds.2021-055765

Rao S, Lee GM, Razzaghi H, et al. Clinical Features and Burden of Postacute Sequelae of SARS-CoV-2 Infection in Children and Adolescents. JAMA Pediatr. 2022;176(10):1000. doi:10.1001/jamapediatrics.2022.2800

Bose-Brill S, Hirabayashi K, Schwimmer E, et al; Researching COVID to Enhance Recovery consortium. Pediatric nirmatrelvir/ritonavir prescribing patterns during the COVID-19 pandemic. Hosp Pediatr. 2024;14(8):e341-e348. doi:10.1542/hpeds.2023-007132

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 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

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

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 April 14, 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):

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