MAKE YOUR VOICE HEARD IN CELIAC DISEASE
AND NON-CELIAC WHEAT SENSITIVITY RESEARCH
Are you living with celiac disease or caring for someone with celiac disease?
Do you want to help design and evaluate celiac disease research?
Then we need you!
What is patient-centered outcomes research?
For too long, scientists have been conducting, evaluating, and disseminating research without the benefit of your expertise. That’s right. Patients and their caregivers are experts in living with their health condition. Your unique perspective gives you a nuanced understanding of celiac disease. We need patient-centered healthcare for celiac disease, and the way to make care patient-centered is to start with patient-centered research. Patients engage in all aspects of the research process, from identifying key research questions to dissemination and implementation of results.
What would I do with this training?
Researchers are looking to partner with trained patients. The national organization, Patient-Centered Outcomes Research Institute (PCORI), involves trained patients in evaluating their funding applications and as PCORI Ambassadors. The National Institutes of Health (NIH) also has opportunities for patient advocates to evaluate grant proposals. CDF also offers opportunities to serve on CDF’s Research Committee and on the steering committees of CDF-funded research projects.
What will I learn?
You will learn about patient-centered outcomes research and how it has impacted our healthcare system. You will learn about the latest in celiac disease research and interact with leading scientists in the field. You will learn about clinical and scientific research processes, how to ask your own research questions, and how to serve on research study committees.
What is expected of me?
- Register to be a CDF Patient Advocate
- Complete a baseline assessment of your celiac disease knowledge
- View the Online Program at your convenience OR attend the Two-Part Webinar (coming soon!)
- Complete each Understanding Check
- Complete a post-assessment of your celiac disease knowledge
- Enter your or your child’s data in the iCureCeliac patient registry
What else do I need to know?
How do I sign up?
This training curriculum was funded through a Patient Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (2643-CDF).