We are proud to announce that the Jansen’s Foundation has been awarded a prestigious Engagement Award from the Patient-Centered Outcomes Research Institute (PCORI)—the leading funder of patient-centered comparative clinical effectiveness research (CER) in the United States.
This two-year project, running from June 1, 2025 through May 31, 2027, aims to empower the Jansen’s Disease community to take an active role in shaping research that reflects the real needs and experiences of those living with this ultra-rare condition.
The award, fully executed on May 15, 2025, was granted through the Eugene Washington PCORI Engagement Award Program, which supports efforts to meaningfully engage patients, caregivers, clinicians, and others as full partners in research that matters to them.
About the Project
Goal:
To build capacity within the Jansen’s community to participate in patient-centered CER and to ensure research priorities are aligned with the lived experiences of patients and caregivers.
Key Objectives:
Enhance Community Knowledge and Skills in patient-centered CER
Establish Collaborative Partnerships for setting research priorities
Create a Patient-Centered CER Roadmap specific to Jansen’s Disease
Why This Project Matters
People living with Jansen’s Disease often face complex, poorly understood health challenges. Until now, research priorities have largely been driven by researchers and funders—with limited input from those most affected.
This award allows Jansen’s to:
Ensure research outcomes are meaningful to patients and caregivers
Align patient-centered outcomes with the NIH’s ongoing clinical trial for Jansen’s
Equip the community with the tools and knowledge to actively shape the research agenda
Foster stronger collaborations between researchers, clinicians, and patient advocates
Create a sustainable foundation for future research that is relevant, effective, and impactful
About PCORI
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information they need to make better-informed healthcare decisions. PCORI focuses on comparative clinical effectiveness research, which evaluates the effectiveness of different interventions to determine what works best, for whom, and under what circumstances.
Learn more about PCORI at pcori.org/about
Stay Connected
Follow The Jansen’s Foundation as we work to uplift the voices of our community, foster patient-centered research, and drive progress toward better outcomes for everyone affected by Jansen’s Disease.
For questions or media inquiries, please contact:
Dr. Neena Nizar
neenan@thejansensfoundation.org