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

Study Updated 03/05/2024

Study Design: Measurement development and validation
PCORnet Infrastructure: Collaboration, Engagement, Single IRB
Principal Investigator: Monica Perez Jolles
Site Name: University of Colorado, School of Medicine
PCORnet® Network Partner: External
Funder: Patient-Centered Outcomes Research Institute (PCORI)
Funding Date: 2023
Study Duration: 2023 – 2025
Participating Clinical Research Networks: ADVANCE, PaTH, REACHnet
Therapeutic Area: Other, Engagement
Status: Not yet recruiting

Research Question(s): Through this proposal, the research team will develop and test a new Co-creation in PCOR engagement measure that can be used to evaluate how researchers and community members work collaboratively and co-learn during the engagement process.

The COVID-19 and Diabetes Assessment (CODA) Study

Study Updated 03/28/2024

Study Design: Prospective Observational
PCORnet Infrastructure: Collaboration, CDM (+supplemental data), Engagement, Single IRB
Principal Investigator: Russell Rothman
Site Name: Vanderbilt University Medical Center (VUMC)
PCORnet® Network Partner: STAR
Funder: NIDDK/NIH
Funding Date: 2023
Study Duration: 2023 – 2027
Participating Clinical Research Networks: GPC, INSIGHT, OneFlorida+, PaTH, PEDSnet, REACHnet, STAR
Therapeutic Area: Metabolic Disorders
Condition: COVID-19, Diabetes
Population: 18 Years and older (Adult, Older Adult)
Status: Not yet recruiting

Research Question(s):  The study will answer important questions patients are asking about the link between diabetes and COVID-19.

  1. To what extent does COVID-19 cause worse glycemic control, vascular function, inflammation, and increased risk for blood clots in people with either type 1 or type 2 diabetes?
  2. The study will also explore the role of genomic, social, and environmental factors on metabolic function and the impact of COVID-19 infection and COVID-19 treatments on diabetes-related outcomes.

TBD: Improving LDLC management in underrepresented populations

Study Updated 03/28/2024

Study Design: Interventional
PCORnet Infrastructure: Collaboration, CDM (+supplemental data), Engagement, Single IRB
Principal Investigator: Neha Pagidipati
Site Name: Duke Clinical Research Institute
PCORnet® Network Partner: Coordinating Center
Funder: Novartis
Funding Date: 2023
Study Duration: 2023 – 2025
Participating Clinical Research Networks: GPC, OneFlorida+, PaTH, REACHnet, STAR 
Therapeutic Area: Cardiovascular
Condition: Atherosclerotic Cardiovascular Disease (ASCVD)
Status: Not yet recruiting

Research Question(s):
Can inclisiran be an effective solution to improve low-density lipoprotein-cholesterol management and close care gaps in an inclusive Atherosclerotic Cardiovascular Disease (ASCVD) and ASCVD risk equivalent population?

Measurement Matters: Refining and Validating a Patient-Centered Outcomes Research Engagement Measure

Study Updated 03/06/2024

 

Study Design: Development and initial validation of a PCOR engagement tool
PCORnet Infrastructure: Collaboration, Engagement, Single IRB
Principal Investigator: Marc A. Cohen
Site Name: University of Massachusetts, Boston
PCORnet® Network Partner: External
Funder: Patient-Centered Outcomes Research Institute (PCORI)
Funding Date: 2023
Study Duration: 2023 – 2025
Participating Clinical Research Networks: GPC, PaTH, STAR
Therapeutic Area: Other, Engagement
Condition: Other; Science of Engagement Award to develop and validate an engagement tool on engagement quality and selected outcomes
Population: PCORI lead investigators and/or those who manage PCORI projects
Status: Not yet recruiting

Research Question(s):

  1. Can we develop a concise way to measure the extent to which researchers engaging older adults in research projects are doing so effectively and can we assign a score that represents a value for the quality of engagement?
  2. Having done this, can we then apply this new measure to score projects that are engaging older adults in research and see whether higher quality engagement scores are related to better short and medium term PCOR project outcomes?