PCORI Engagement Award Project: Building Research Capacity in the Jansen’s Community

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 will bring together patients, caregivers, clinicians, researchers, and advocates to collaboratively define a research agenda that focuses on what matters most to the community. The project is led by The Jansen’s Foundation (TJF), with a strong team of leaders and collaborators 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, all identified Jansen’s community stakeholders, including patients, caregivers, and advocates, are participating in PCORI’s “Research Fundamentals” training. This program is designed to introduce participants to the basics of health research and the principles of patient-centered comparative effectiveness research (CER).

What makes this phase especially impactful is that it ensures community members are not just consulted in research, they are equipped to be active partners. The training has been adapted for accessibility and is offered in simplified, multilingual formats (including Spanish), to ensure that all participants can engage meaningfully, regardless of background or experience.

Importantly, all stakeholders who complete the training will be compensated for their time and effort. This ensures equitable participation and recognizes the value of patient and caregiver contributions in shaping the research landscape.

Building Toward a Community-Led Research Agenda

Once Phase 1 is completed, the project will move into deeper engagement and co-creation of a patient-centered research roadmap. Through a series of surveys, interviews, and focus groups, the team will collect insights from the Jansen’s community to identify what health outcomes, treatments, and challenges are most important to study.

Findings from these activities will directly 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, is aligned with what truly matters to people living with Jansen’s Disease.

Throughout the project, a monthly advisory board made up of researchers, patients, caregivers, and advocates will provide guidance and ensure community voices remain central. The project will also distribute easy-to-understand educational materials, and host community meetings to keep everyone informed and engaged along the way.

Project overiew

Project Team & Stakeholders

Project Leadership :

  • Dr. Neena Nizar – Project Lead

  • Dr. Meagen Wallace – Project Co-Lead

  • Penni Romero – Administrative Official

Community Representative:

  • Alicia Reason – Jansen’s Community Representative

Research Collaborators:

  • Dr. Harald Jueppner – Massachusetts General Hospital (MGH)

  • Dr. Tom Gardella – Massachusetts General Hospital (MGH)

  • Dr. Smitha Jha – National Institutes of Health (NIH)

  • Dr. Alison Boyce – National Institutes of Health (NIH)

  • Dr. Patricia Koochaki - Senior PI, ICON PLC

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

Get Involved

This is your opportunity to help shape the future of research in Jansen’s Disease. Whether you’re a patient, caregiver, clinician, or advocate, your voice matters. Participation in training, surveys, and focus groups will help define what treatments, outcomes, and questions are most relevant to our community.

We’re building a long-term path toward research that reflects lived experiences, identifies meaningful endpoints, and improves the quality of care for everyone affected by Jansen’s.

Questions? Want to participate?
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.