Project Summary

The purpose of the Patient Engagement Celiac Disease Network (PECDN) is to develop a patient-led nationwide cohort with the (1) knowledge and understanding of how to develop research questions meaningful to adults and children with celiac disease and their caregivers, (2) training necessary to partner with clinicians and researchers in developing and implementing PCOR projects, and (3) ability to serve as patient advisors in key committees at the National Institutes of Health, the Food and Drug Administration, the Center for Medicare and Medicaid Services, the Patient-Centered Outcomes Research Institute, and other organizations in the research ecosystem. As part of the program, these knowledgeable and empowered patients will then participate as mentors (e.g., “train the trainer”) to go on to exponentially expand the community of research-savvy celiac disease patients/stakeholders.

The projected outputs from this project are a training curriculum to educate patients and stakeholders about scientific concepts related to celiac disease, integration as collaborators on research projects, successful participation in the submission and review of proposals, and outreach and networking to communicate initiatives and outcomes from funded research; the training of a cohort of patients to understand PCOR and participation in key advisory committees; the recruitment, training, and mentoring of a cohort of mentors to participate in PCOR projects, advisory groups at NIH, FDA, PCORI, and other organizations, and to further mentor and expand the program; web-training modules/open online courses in PCOR, clinical trials, and celiac disease; and increased PCOR in celiac disease.

Project collaborators include USC; UCLA; Leidos; and non-industry patients/stakeholders who are part of the Advisory Council and/or Pilot Project participants.

Project Information

Marilyn Geller, MSPH
Celiac Disease Foundation
$250,000

Key Dates

24 months
2015

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Project Status
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Last updated: March 4, 2022