The Foundation for Sarcoidosis Research (FSR) is proud to share our implementation of a Patient Stakeholder Reviewer Panel into our grant review cycles. This is a review process that brings the patient voice directly into evaluation of research proposals. It gives individuals living with sarcoidosis and their care partners the opportunity to share their perspective on how relevant, understandable, and meaningful a proposed study may be for the community it aims to serve.
Who can be a Patient Stakeholder Reviewer?
- A lay stakeholder (non-scientist) who is a patient, caregiver, or other advocate with an intimate experience with sarcoidosis
- A volunteer without formal training as a scientist who possess a strong interest in advancing FSR’s mission
- An individual willing to add an outside perspective to research that reflects the insights of those impacted by sarcoidosis
- A person interested in bridging the gap between scientists and the patient community to prompt a patient-centered search for more effective prevention, diagnosis, and treatments
What is the role of the Patient Stakeholder Reviewer?
- Represent the collective views of patients, family members, and others affected by sarcoidosis
- Read and evaluate research grant proposals for relevance to FSR’s Research Agenda
- Advise FSR on research project funding decisions by attending a meeting with your fellow reviewers to discuss the strengths and weaknesses of the projects from the patient perspective
- Offer insights into training, resources, and revised processes for the next application cycle
In May 2026, FSR completed the 2026 FSR Established Investigator Grant review process with the help of patient reviewers who brought lived experiences and thoughtful insights into the evaluation of research proposals. Their perspectives helped FSR look beyond the scientific merit alone and consider how each project may affect the daily lives, priorities, and challenges of people living with sarcoidosis.
“The research is fascinating—You can help future sarc patients without leaving home, even while sitting down!—It’s a challenge but if you think you might be up to it, please try; I rely on a dictionary myself—You’ll meet interesting practitioners and other sarc patients…” – Patient Stakeholder Reviewer, Anne Nissen
The patient review process followed a guided timeline designed to support meaningful participation. It began with a training session for the full group, followed by a Q&A session with a member of FSR’s Scientific Advisory Board (SAB). Reviewers were then assigned applications and given time to read, evaluate, and critique them in the grant review platform. The process concluded with a patient grant review meeting where the highest-rated applications were discussed together as a group before final input was incorporated into the overall review process.
“The Q&A session with Dr. Crouser (FSR SAB Chair) was extremely helpful. They [FSR and Dr. Crouser] reminded us
to think of how important the outcome and/or tool of the study is to patients as the scientific reviewers look at the methods, representation in research, practicality, etc. These tips were very helpful especially to those of us who were new to the process.” – Patient Stakeholder Reviewer, Nancy Howard
This initiative reflects a growing movement in research to ensure that patients are not just participants, but partners in shaping the future of sarcoidosis care. By including patient voices in funding decisions, FSR is ensuring that research focuses on what truly matters for those living with sarcoidosis – improving daily life, addressing real challenges, and driving meaningful outcomes.
“The discussion moved at a comfortable pace, and the mix of perspectives felt balanced and helpful. I didn’t feel rushed, and the structure supported a thoughtful conversation. Thank you for creating such an inclusive and meaningful space for patient voices.” – Patient Stakeholder Reviewer, Donna Harvin-Graham
FSR is committed to expanding the Patient Stakeholder Reviewer Panel in future grant cycles. We encourage individuals living with sarcoidosis, as well as caregivers, who are interested in contributing their perspective to reach out and get involved. Your voice can play an important role in shaping the direction of future sarcoidosis research.
Apply to be a Patient Stakeholder Reviewer HERE by 9/10/2026.