Studies

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

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?

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

Medications and Weight Gain in PCORnet: The MedWeight Study

Posted on by Jodi Snare

Page last updated May 11, 2026

Study Website: Medications and Weight Gain in PCORnet: The MedWeight Study
Study Design: Prospective Observational Study
PCORnet Infrastructure: Common Data Model (CDM), Single IRB, Patient partners or engagement
Principal Investigator: Jason P. Block
Institution: Harvard Pilgrim Healthcare Institute
PCORnet® Network Partner: Legacy PCORnet Partner
Funder: Federal (NIH)
Funding Date: 2020
Study Duration: 2020 – 2024
Participating PCORnet® Clinical Research Networks: GPC, OneFlorida+, PEDSnet, STAR
Therapeutic Area: Metabolic Disorders
Condition: Obesity; Diabetes
Age Range: Children 5 to 19 Years and Adults 20+ Years (Child, Adult)
Status: Completed

Research Question(s):
How do six classes of commonly prescribed medications influence weight, risk for diabetes, and cholesterol over time?

Publication(s):

Sun JW, Young JG, Sarvet AL, et al. Comparison of rates of Type 2 Diabetes in adults and children treated with anticonvulsant mood stabilizers. JAMA Netw Open. 2022;5(4). doi:10.1001/jamanetworkopen.2022.6484

Petimar J, Young JG, Yu H, et al. Medication-Induced Weight Change Across Common Antidepressant Treatments : A Target Trial Emulation Study. Ann Intern Med. 2024;177(8):993-1003. doi:10.7326/M23-2742

Lin PD, Rifas-Shiman S, Merriman J, et al. Trends of Antihypertensive Prescription Among US Adults From 2010 to 2019 and Changes Following Treatment Guidelines: Analysis of Multicenter Electronic Health Records. J Am Heart Assoc. 2024;13(9):e032197. doi:10.1161/JAHA.123.032197

Pragmatic Evaluation of Events and Benefits of Lipid-lowering in Older Adults (PREVENTABLE)

Posted on by Jodi Snare

Page last updated April 14, 2026

Study Website: PREVENTABLE
ClinicalTrials.gov#: NCT04262206
Study Design: Intervention Trial
PCORnet Infrastructure: Common Data Model (CDM), Single IRB, Patient partners or engagement
Principal Investigator: Karen Alexander
Institution: Duke Clinical Research Institute
Funder: Federal (NIH); (Project webpage)
Funding Date: 2019
Study Duration: 2020 – 2027
Participating PCORnet® Clinical Research Networks: ADVANCE, GPC, INSIGHT, OneFlorida+, PaTH, REACHnet, STAR
Therapeutic Area: Cardiovascular
Condition: Cognitive Impairment, Mild; Dementia; Cardiovascular Diseases
Age Range: 75 Years and older (Older Adult)
Status: Recruiting

Research Question(s):
Can a statin help prevent dementia and disability in adults aged 75 or older, as well as heart attacks and other cardiovascular-related deaths, while not increasing risks of adverse health outcomes?

Primary Publication(s):

Sachs BC, Rapp SR, Kistler CE, et al. The pragmatic evaluation of events and benefits of lipid-lowering in older adults (PREVENTABLE) trial: study design and procedures for cognitive assessment and adjudication. Alzherimers. Dement., 2021; 17(Supp.9). doi.org/10.1002/alz.054022