PCORI Engagement Award Project

Project Title: Building Capacity for Jansen's Community to Explore Patient-Centered Comparative Clinical Effectiveness Research Opportunities
Award Period: June 1, 2025 - May 31, 2027
Funder: Patient-Centered Outcomes Research Institute (PCORI)

This PCORI-funded initiative is a groundbreaking opportunity for the Jansen's Disease community to take an active role in shaping the future of research. The goal of the project is to build long-term capacity within the community to participate in and influence patient-centered comparative clinical effectiveness research (CER), ensuring that the outcomes being studied truly reflect the priorities and lived experiences of people affected by Jansen's Disease.

With support from the Eugene Washington PCORI Engagement Award Program, this two-year project brings together patients, caregivers, clinicians, researchers, and advocates to collaboratively define a research agenda focused on what matters most to the community. The project is led by The Jansen's Foundation (TJF), in collaboration with leaders from the medical research field and the broader Jansen's Medical Community (JMC).

Phase 1: Training in Research Fundamentals

The project is currently in Phase 1, which focuses on education and capacity-building. During this phase, Jansen's community stakeholders -- including patients, caregivers, and advocates -- participate in PCORI's Research Fundamentals training program.

This training introduces participants to the basics of health research and the principles of patient-centered comparative effectiveness research (CER), ensuring community members are equipped to be active research partners -- not just consultees.

To ensure equitable participation, training materials have been adapted for accessibility and are offered in simplified, multilingual formats, including Spanish. All stakeholders who complete the training are compensated for their time and effort, recognizing the value of lived experience in shaping meaningful research.

Building Toward a Community-Led Research Agenda

Following Phase 1, the project will move into deeper engagement and co-creation of a patient-centered research roadmap. Through surveys, interviews, and focus groups, the team will gather insights from the Jansen's community to identify priority outcomes, treatments, and challenges.

These findings will inform the development of a Jansen's-specific CER Road Map -- a strategic document outlining research priorities, community values, and key focus areas for future studies. This roadmap will help ensure that future research, including NIH-led clinical trials, aligns with what truly matters to people living with Jansen's Disease.

Throughout the project, a monthly advisory board composed of researchers, patients, caregivers, and advocates will guide progress and keep community voices central. Educational materials and community meetings will support transparency and ongoing engagement.

Project Team & Stakeholders

Steering Committee & Advisory Board: The Jansen's Foundation is grateful for a diverse group of stakeholders representing researchers, caregivers, clinicians, and patient advocates who guide the strategic direction of this project.

Get Involved

This project offers an opportunity for patients, caregivers, clinicians, and advocates to help shape the future of research in Jansen's Disease. Participation in training, surveys, and focus groups ensures that research priorities reflect lived experience and real-world needs.

We are building a long-term path toward research that identifies meaningful endpoints and improves quality of care for everyone affected by Jansen's.

Questions or interested in participating?
Please contact us at: info@thejansensfoundtion.org

Stay connected for updates and opportunities to engage. Together, we are shaping a more patient-centered future for Jansen's Disease.