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!

Additional Readings about PCOR

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