Studies

Implementation Program to Improve Screening and management for CKD in Diabetes (IRIS-CKD)

Posted on by Jodi Snare

Page last updated May 11, 2026

ClinicalTrials.gov#: NCT06906627 - Program 1
ClinicalTrials.gov#: NCT06906640 - Program 2
Study Design: Prospective Observational Study
PCORnet Infrastructure: Patient partners or engagement
Principal Investigator: Neha Pagidipati
Institution: Duke Clinical Research Institute
PCORnet® Network Partner: The Coordinating Center for PCORnet®
Funder: Industry (Bayer, Boehringer Ingelheim, Lilly)
Funding Date: 2024
Study Duration: 2024 – 2026
Participating PCORnet® Clinical Research Networks: INSIGHT, OneFlorida+, PaTH, REACHnet, STAR 
Therapeutic Area: Nephrology
Condition: CKD in Diabetes
Status: Recruiting

Research Question(s):
IRIS-CKD is a project focused on improving how doctors check for and treat chronic kidney disease (CKD) in people with type 2 diabetes (T2D). The main goals of the project are to:

  • Increase the number of people with type 2 diabetes who get screened for chronic kidney disease.
  • Ensure that more patients with both chronic kidney disease and type 2 diabetes receive the treatments recommended by medical guidelines.

Achieving Equity: Inclusion of Adults with Congenital Heart Disease (CHD) Living with Neurodevelopmental Disorders (NDDs) in Patient Centered Outcomes Research

Posted on by Jodi Snare

Page last updated April 14, 2026

Study Design: Other, Mixed method study - has a prospective cohort
PCORnet Infrastructure: Common Data Model (CDM), Patient partners or engagement
Principal Investigator: Anitha John
Institution: Children's National Hospital
PCORnet® Network Partner: PEDSnet
Funder: Patient-Centered Outcomes Research Institute (PCORI); (Project webpage)
Funding Date: 2024
Study Duration: 2024 – 2028
Participating PCORnet® Clinical Research Networks: OneFlorida+; PEDSnet, REACHnet, STAR
Therapeutic Area: Cardiovascular
Status: Recruiting

Research Question(s):

1) What are the engagement strategies needed for individuals living with NDD and CHD?
2) What metrics (such as surveys, focus groups, etc.) can be employed to measure engagement in individuals living with NDD?

USDHub: Community Resource for Urinary Stone Disease Research

Posted on by Jodi Snare

Page last updated May 11, 2026

Study Design: Other, Real World Evidence
PCORnet Infrastructure: Common Data Model (CDM), Single IRB, Patient partners or engagement
Principal Investigator: Ryan Hsi
Institution: Vanderbilt University Medical Center
PCORnet® Network Partner: STAR
Funder: Federal (NIH)
Funding Date: 2024
Study Duration: 2024 – 2029
Participating PCORnet® Clinical Research Networks: PEDSnet, STAR
Therapeutic Area: Nephrology
Status: Active, not recruiting

Research Question(s): Can a data resource be created to strengthen urinary stone disease research that will generate new knowledge that improves the health of all individuals with urinary stone disease?

A Clinical Trial Readiness Study of Patient Reported Outcome Measures in TTP (THINK-TTP)

Posted on by Jodi Snare

Page last updated June 06, 2026

Study Design: Prospective Observational Study
PCORnet Infrastructure: Single IRB, Patient partners or engagement
Principal Investigator: Toyosi Onwuemene and Theresa Coles
Institution: Duke University
PCORnet® Network Partner: STAR
Funder: Federal (NIH/NCATS)
Funding Date: 2024
Study Duration: 2024 – 2026
Participating PCORnet® Clinical Research Networks: GPC, STAR
Therapeutic Area: Rare Diseases
Status: Completed

Research Question(s): Can we develop a consensus-based strategy that comprehensively measures TTP-associated cognitive function impacts from the patient perspective?

Primary Publication(s):

Coles T, Mkumba L, Thompson D, et al. The THINK-TTP Study for Assessing Cognitive Function in Clinical Trials: A Qualitative Research Protocol. International Journal of Qualitative Methods. 2026;25:16094069261429876.
doi:10.1177/16094069261429876

Transfer Learning NLP to Improve Adoption of Clinical Text in Multi-Site Studies

Posted on by Jodi Snare

Page last updated April 14, 2026

Study Design: Other, Data Science
PCORnet Infrastructure: Common Data Model (CDM), Patient partners or engagement
Principal Investigator: Yonghui Wu
Institution: University of Florida and University of Florida Health
PCORnet® Network Partner: OneFlorida+
Funder: Patient-Centered Outcomes Research Institute (PCORI); (Project webpage)
Funding Date: 2024
Study Duration: 2024 – 2027
Participating PCORnet® Clinical Research Networks: INSIGHT, OneFlorida+
Therapeutic Area: Data Science
Status: Active, not recruiting

Research Question(s): Can large language models - an advanced form of artificial intelligence (AI) - improve the generalizability of patient information extraction and clinical phenotyping across different healthcare systems?

Behavioral Economic and Staffing Strategies to Increase Adoption of the ABCDEF Bundle in the ICU (BEST-ICU)

Posted on by Jodi Snare

Page last updated May 11, 2026

ClinicalTrials.gov#: NCT06184945
Study Design: Intervention Trial
PCORnet Infrastructure: Common Data Model (CDM), Single IRB, Patient partners or engagement
Principal Investigator: Michele Balas
Institution: University of Nebraska Medical Center
PCORnet® Network Partner: GPC
Funder: Federal (NIH NHLBI & NINR)
Funding Date: 2024
Study Duration: 2024 - 2028
Participating PCORnet® Clinical Research Networks: GPC, PaTH
Therapeutic Area: Healthcare Delivery
Status: Active, not recruiting

Research Question(s): What is the best way to encourage ICU clinicians to consistently and completely implement the ABCDEF Bundle in their care of mechanically ventilated patients?

Primary Publication(s):

Conte M, Schlaeger J, Marsolo K, et al. Computable phenotypes for research using real-world data: experiences from the NIH Pragmatic Trials Collaboratory. J Am Med Inform Assoc. In review.

Vasilevskis, Eduard E., Jungyoon Kim, Christopher Wichman, Ronnie Horner, James R. Campbell, Carol Reynolds Geary, Justin Birge et al. "Behavioral Economic and Staffing Strategies To Increase Adoption of the ABCDEF Bundle in the Intensive Care Unit (BEST ICU): study protocol for a multi-site stepped-wedge cluster randomized controlled trial in the USA." Trials (2025). doi.org/10.1186/s13063-025-09331-6

REducing future fractureS and improving ouTcOmes of fRagility fracture (RESTORE)

Posted on by Jodi Snare

Page last updated August 22, 2025

ClinicalTrials.gov#: NCT06455085
Study Design: Intervention Trial
PCORnet Infrastructure: Common Data Model (CDM), Single IRB, Patient partners or engagement
Principal Investigator: Kenneth Saag
Institution: University of Alabama at Birmingham
PCORnet® Network Partner: OneFlorida+
Funder: Patient-Centered Outcomes Research Institute (PCORI); (Project webpage)
Funding Date: 2023
Study Duration: 2024 - 2029
Participating PCORnet® Clinical Research Networks: GPC, INSIGHT, OneFlorida+, PaTH, REACHnet, STAR
Therapeutic Area: Healthcare Delivery
Status: Recruiting

Research Question(s): For adults 50 and older who have had a recent fracture, can a Fracture Liaison Service that includes a patient navigator, access to a bone health provider, and increased use of bone-strengthen medications help prevent future fractures and improve quality of life?

Choosing Immune Suppression in Renal Transplantation by Efficacy and Morbidity (CISTEM2)

Posted on by Jodi Snare

Page last updated June 06, 2026

Study Design: Retrospective Observational Study
PCORnet Infrastructure: Common Data Model (CDM), Patient partners or engagement
Principal Investigator: Vikas Dharnidharka and David Axelrod
Institution: University of Missouri
PCORnet® Network Partner: GPC
Funder: Federal (NIH)
Funding Date: 2024
Study Duration: 2024 - 2029
Participating PCORnet® Clinical Research Networks: GPC, OneFlorida+, STAR
Therapeutic Area: Nephrology
Status: Active, not recruiting

Research Question(s): 

  1. Can we identify optimal immunosuppression management strategies for kidney transplant patients leveraging real world data?

Test 2 Treat

Posted on by Jodi Snare

Page last updated May 11, 2026

Study Design: Intervention Trial
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 (Amgen)
Funding Date: 2023
Study Duration: 2023 – 2025
Participating PCORnet® Clinical Research Networks: GPC, PaTH, REACHnet, STAR
Therapeutic Area: Cardiovascular
Condition: Atherosclerotic Cardiovascular Disease (ASCVD)
Study Status: Active, not recruiting

Research Question(s): Can we improve the testing and treatment of high cholesterol in patients who have been hospitalized for a cardiac event by providing education to doctors and patients?

Measuring Co-creation During the Engagement Process in Research: A Pathway Forward

Posted on by Jodi Snare

Page last updated March 12, 2026

Study Design: Other, Measurement development and validation
PCORnet Infrastructure: Single IRB, Patient partners or engagement
Principal Investigator: Monica Perez Jolles
Institution: University of Colorado
PCORnet® Network Partner: External
Funder: Patient-Centered Outcomes Research Institute (PCORI); (Project webpage)
Funding Date: 2023
Study Duration: 2023 – 2026
Participating PCORnet® Clinical Research Networks: ADVANCE, PaTH, REACHnet
Therapeutic Area: Engagement Methods
Status: Completed

Research Question(s): How can we measure the process of co-creation in a way that is pragmatic, valid, reliable, and associated with meaningful engagement outcomes?

Primary Publication(s):

Jolles MP, Willging C, Tufte J, et al. Development and validation of a pragmatic measure of cocreation in research engagement: a study protocol. BMJ Open. 2024;14(12):e091966. doi: 10.1136/bmjopen-2024-091966