PCORI

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 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?

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.

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

Implementation of Patient-Reported Outcomes Measurement in Routine Clinical Practice for Heart Patients in PCORnet

Posted on by Jodi Snare

Page last updated April 14, 2026

Study Design: Prospective Observational Study
PCORnet Infrastructure: Common Data Model (CDM), Single IRB, Patient partners or engagement
Principal Investigator: Justin Bachmann
Institution: Vanderbilt University Medical Center
PCORnet® Network Partner: STAR
Funder: Patient-Centered Outcomes Research Institute (PCORI); (Project webpage)
Funding Date: 2018
Study Duration: 2019 – 2021
Participating PCORnet® Clinical Research Networks: PaTH, STAR
Therapeutic Area: Cardiovascular
Condition: Congestive Heart Failure
Age Range: 75 Years and older (Older Adult )
Status: Completed

Research Question(s):
Can PCORnet be leveraged to implement patient-reported outcome measures in routine clinical practice for heart failure patients at three different institutions?

Evaluating the Comparative Effectiveness of Telemedicine in Primary Care: Learning from the COVID-19 Pandemic

Posted on by Jodi Snare

Page last updated February 4, 2026

ClinicalTrials.gov#: NCT04684836
Study Design: Other, Telephone survey of primary care practice leadership, qualitative interview study with patients and primary care providers, observational data analysis
PCORnet Infrastructure: Common Data Model (CDM), Single IRB, Patient partners or engagement
Principal Investigator: Jessica Ancker and Rainu Kaushal
Institution: Weill Cornell Medicine
PCORnet® Network Partner: INSIGHT
Funder: Patient-Centered Outcomes Research Institute (PCORI); (project webpage)
Funding Date: 2020
Study Duration: 2020 – 2023
Participating PCORnet® Clinical Research Networks: INSIGHT, OneFlorida+, STAR
Therapeutic Area: Healthcare Delivery
Condition: Asthma; Chronic Obstructive Pulmonary Disease (COPD); Congestive Heart Failure; Diabetes; Hypertension
Age Range: 19 Years and older (Adult, Older Adult)
Status: Completed

Research Question(s):

  1. What are the features of primary care telemedicine programs that have been newly implemented or expanded in response to the COVID-19 pandemic.
  2. How do different populations experience these programs?

Primary Publications(s):

Lin, J.J., Horowitz, C.R., Ancker, J.S. An Urgent Need for Guidelines for Telemedicine Use. J Gen Intern Med 38, 1061–1062 (2023). doi:10.1007/s11606-022-07905-7

Yu J, Andreadis K, Schpero WL, et al. Patient experiences with and preferences for telemedicine relative to in-person care during the COVID-19 pandemic. Telemedicine and e-Health. Published online 2023. doi:10.1089/tmj.2022.0311

Muellers KA, Andreadis K, Ancker JS, et al. Provider and patient experiences of delays in primary care during the early COVID-19 pandemic. Journal for Healthcare Quality. 2023;45(3):169-176. doi:10.1097/jhq.0000000000000380

Cognitive Behavioral Therapy and Real-Time Pain Management Intervention for Sickle Cell via Mobile Applications (CaRISMA)

Posted on by Jodi Snare

Page last updated October 29, 2025

Study Website: CaRISMA
ClinicalTrials.gov#: NCT04419168
Study Design: Intervention Trial
PCORnet Infrastructure: Common Data Model (CDM), Single IRB, Patient partners or engagement
Principal Investigator: Charles Jonassaint
Institution: University of Pittsburgh
PCORnet® Network Partner: PaTH
Funder: Patient-Centered Outcomes Research Institute (PCORI); (Project webpage)
Funding Date: 2020
Study Duration: 2020 – 2024
Participating PCORnet® Clinical Research Networks: PaTH, STAR
Therapeutic Area: Mental and Behavioral Health
Condition: Chronic Pain; Depression; Anxiety; Opioid Use
Age Range: 18 Years and older (Adult, Older Adult)
Status: Completed

Research Question(s):
Does mobile phone-delivered computerized cognitive behavioral therapy provide a greater benefit for daily pain and depression in adult patients with sickle cell disease than digital education?

Primary Publications(s):

Badawy SM, Abebe KZ, Reichman CA, et al. Comparing the effectiveness of education versus digital cognitive behavioral therapy for adults with sickle cell disease: protocol for the cognitive behavioral therapy and real-time pain management intervention for sickle cell via mobile applications (CaRISMA) study. JMIR Res Protoc, 2021; 10(5):e29014. doi:10.2196/29014