Do you feel that researchers understand living with OI?

Do you feel disconnected from the research being done on OI?

Do you feel that current research is relevant to you?

The Osteogenesis Imperfecta Foundation (OIF) has been approved for a funding award through the Eugene Washington PCORI Engagement Awards (Engagement Awards) program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI).

PCORI is an independent, nonprofit organization authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers, and clinicians with the evidence needed to make better-informed health and healthcare decisions. PCORI is committed to seeking input from a broad range of stakeholders to guide its work. The funds will support bringing together stakeholder groups including patients, caregivers, clinicians and researchers, on an equal footing to identify and fill knowledge gaps, prioritize questions to be addressed with research, and return discoveries to the entire OI community to support collaborative decision making and improve health outcomes.

How does the Patient-Centered Outcomes Research Impact You?

Patient-centered outcomes research (PCOR) is research driven by the OI community’s needs and concerns. Results will help drive research to address the concerns that you feel are most important to you.

What is the OIF’s PCOR Project?

The PCOR project represents the OI Foundation’s first step to engage the entire OI community in defining the critical aspects of living with OI across the lifespan. This will promote the development of a coalition of community and medical professionals who will direct new OI research. The long term goal is to provide patients, caregivers and clinicians better information with which to make important medical and lifestyle decisions.

  • Click here to read the full Project Summary
  • Click here to see the work that we are currently doing on our project!

This website was funded through a Patient-Centered Outcomes Research Institute® (PCORI®) Eugene Washington PCORI Engagement Award (14517-OIF)

OIF PCOR Introduction Video

On April 3, 2020, the OI Foundation brought together the OI community to discuss the importance of patient-centered outcomes research in defining the natural history of osteogenesis imperfecta. Each session of the meeting is presented as a separate module, so you can watch them at your leisure. [15 Minutes]

What Makes PCOR Different?
Courtney Clyatt from the Patient Centered Outcomes Research Institute presents how patient centered outcomes research is different from the traditional research paradigm. Courtney touches on many important topics, including what engagement in research looks like when you include people with OI from the beginning. [25 minutes]

Engaging Patients in Patient-Centered Outcomes Research

Dr. Amy Corneli, from Duke University’s Division of Population Health Sciences, addresses how to engage individuals with OI in research as true partners, as well as some best practices in what “good” engagement looks like. [33 minutes]

Measuring What Matters

Dr. Bryce Reeve, from Duke University’s Division of Population Health Sciences talks about how to measure what is important to individuals with OI. He also discusses how the use of PROMIS measures and core outcome assessments, like patient reported outcomes, get to what matters most to the community. [41 minutes]

The OIF Registry

Dr. Laura Tosi, OIF PCORI Award Co-Lead, talks about the current capabilities of the OI Foundation’s registry, and her dreams of how it might expand in the future to better understand the natural history of osteogenesis imperfecta and maximize health outcomes. [27 minutes]

Engaging the Patient Centered Outcomes Research Institute

Courtney Clyatt from the Patient Centered Outcomes Research Institute finishes out the meeting by talking about stakeholders can engage in the important work of PCORI. She covers award options, like the Eugene Washington PCORI Engagement Award Program, as well as how to become more involved on committees at PCORI. [25 minutes]