Studies

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

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?

Outcomes Database to Prospectively Assess Changing Therapy Landscape in Renal Cell Carcinoma (ODYSSEY RCC)

Posted on by Jodi Snare

Page last updated October 29, 2025

ClinicalTrials.gov#: NCT04919122
Study Design: Prospective Observational Study
PCORnet Infrastructure: Common Data Model (CDM), Patient partners or engagement
Principal Investigator: Dan George
Institution: Duke Clinical Research Institute
PCORnet® Network Partner: The Coordinating Center for PCORnet®
Funder: Exelixis, Bristol Myers Squibb, Merck, Pfizer
Funding Date: 2020
Study Duration: 2022 – 2026
Participating PCORnet® Clinical Research Networks: GPC, PaTH, REACHnet, STAR
Therapeutic Area: Oncology
Condition: Metastatic Renal Cell Carcinoma
Age Range: 19 Years and older (Adult, Older Adult)
Status: Active, not recruiting

Research Question(s):

  1. Can a research registry of patients with metastatic renal cell carcinoma (mRCC) patients help us better understand cancer management and health-related quality of life while receiving mRCC specific treatment? In combination with patient and physician surveys, PCORnet will be used to help us answer these questions.

Primary Publication(s):

Bhavsar NA, Harrison MR, Scales CD, et al. Design and Rationale of the Outcomes Database to Prospectively Assess the Changing Therapy Landscape in Renal Cell Carcinoma Registry: A Multi-institutional, Prospective Study of Patients with Metastatic Renal Cell Carcinoma. Eur Urol Open Sci. 2024;66:75-81. Published 2024 Jul 3. doi:10.1016/j.euros.2024.06.007

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

ACTIV-6: COVID-19 Study of Repurposed Medications

Posted on by Jodi Snare

Page last updated November 12, 2025

ClinicalTrials.gov#: NCT04885530
Study Design: 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: NIH
Funding Date: 2021
Study Duration: 2021 – 2025
Participating PCORnet® Clinical Research Networks: GPC, INSIGHT, OneFlorida+, PaTH, REACHnet, STAR
Therapeutic Area: Infectious Disease
Condition: COVID-19
Age Range: 30 Years and older (Adult, Older Adult)
Status: Active, not recruiting

Research Question(s):
Can repurposed medications reduce symptoms of non-hospitalized participants with mild to moderate COVID-19?

Primary Publication(s):

Naggie S, Boulware DR, Lindsell CJ, et al. Effect of Ivermectin vs Placebo on Time to Sustained Recovery in Outpatients With Mild to Moderate COVID-19: A Randomized Clinical Trial. JAMA. 2022;328(16):1595–1603. doi:10.1001/jama.2022.18590

McCarthy MW, Naggie S, Boulware DR, et al. Effect of Fluvoxamine vs Placebo on Time to Sustained Recovery in Outpatients With Mild to Moderate COVID-19: A Randomized Clinical Trial. JAMA. 2023;329(4):296–305. doi:10.1001/jama.2022.24100

Naggie S, Boulware DR, Lindsell CJ, et al. Effect of Higher-Dose Ivermectin for 6 Days vs Placebo on Time to Sustained Recovery in Outpatients With COVID-19: A Randomized Clinical Trial. JAMA. 2023;329(11):888–897. doi:10.1001/jama.2023.1650

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

Posted on by Jodi Snare

Page last updated October 29, 2025

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 – 2025
Participating PCORnet® Clinical Research Networks: GPC, OneFlorida+, PaTH, PEDSnet, STAR
Therapeutic Area: Autoimmune (Allergy & Immunology)
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.

Primary Publication(s):

Weiss PF, Sears CE, Brandon TG, et al. Biologic Abatement and Capturing Kids' Outcomes and Flare Frequency in Juvenile Spondyloarthritis (BACK-OFF JSpA): study protocol for a randomized pragmatic trial. Trials. 2023;24(1):100. Published 2023 Feb 8. doi:10.1186/s13063-022-07038-6

Pediatric KIDney Stone (PKIDS) Care Improvement Network

Posted on by Jodi Snare

Page last updated October 29, 2025

Study Website: Pediatric KIDney Stone (PKIDS) Care Improvement Network
ClinicalTrials.gov#: NCT04285658
Study Design: Prospective Observational Study
PCORnet Infrastructure: Common Data Model (CDM), Single IRB, Patient partners or engagement
Principal Investigator: Gregory Tasian
Institution: The Children's Hospital of Philadelphia
PCORnet® Network Partner: PEDSnet
Funder: Patient-Centered Outcomes Research Institute (PCORI); (Project webpage)
Funding Date: 2019
Study Duration: 2020 – 2024
Participating PCORnet® Clinical Research Networks: GPC, OneFlorida+, PaTH, PEDSnet, STAR
Therapeutic Area: Nephrology
Condition: Kidney Stone; Nephrolithiasis
Age Range: 8 Years to 21 Years (Child, Adult)
Status: Completed

Research Question(s):

  1. What are the differences in stone clearance and the lived experiences of youth, age 8-21 years, following ureteroscopy (URS), shock wave lithotripsy (SWL), and percutaneous nephrolithotomy (PCNL) for the removal of kidney and ureteral stones?

Primary Publication(s):

Ellison JS, Lorenzo M, Beck H on behalf of the Pediatric KIDney Stone Care Improvement Network, et al. Comparative effectiveness of paediatric kidney stone surgery (the PKIDS trial): study protocol for a patient-centred pragmatic clinical trial. BMJ Open 2022;12:e056789. doi:10.1136/bmjopen-2021-056789

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 September 2, 2025

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: 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?