MAKE YOUR VOICE HEARD IN CELIAC DISEASE
The goal of our Patient Advocate Program is to teach you more about celiac disease and clinical research so that by the end of the online program you are prepared to participate in research as an informed Patient Advocate.
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?
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. 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 become a Celiac Disease Foundation Patient Advocate
- Complete a baseline assessment of your celiac disease knowledge
- Watch the video modules at your convenience
- 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
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).