MAKE YOUR VOICE HEARD IN CELIAC DISEASE
AND GLUTEN SENSITIVITY RESEARCH

Are you living with celiac disease or caring for someone with celiac disease?
Do you want to partner with researchers to inform celiac disease research?
Do you want to help determine CDF research priorities?

Join Celiac Disease Foundation’s Patients As Partners Research Symposium to
Become a Celiac Disease Patient Advocate

SATURDAY, JUNE 3, 2017, 1:00-5:00 PM

Conference registration is currently closed.

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?

Patient Advocates play an important role in research implementation. Patient Advocates who complete the Research Symposium requirements (see section “What else do I need to know?”) are eligible to:

  • Participate in research opportunities with CDF partners
  • Serve on research study committees and clinical guidelines panels
  • Evaluate grant proposals
  • Mentor new Patient Advocates
  • Become a PCORI Patient Ambassador

What will I learn?

1:00-1:15 PM – Introductions
1:15-1:40 PMPanel 1 Video and Discussion
Video: “What Is Patient-Centered Outcomes Research?” with Talia Machlouf
How patient-centered outcomes research differs from other kinds of health research, the primary areas of patient involvement, and how to partner with researchers and make your patient/caregiver voice heard.
1:45-2:15 PMPanel 2 Video and Discussion
Video: “Gluten Exposed: What Is It All About?” with Dr. Peter Green
Why testing the general population for celiac disease might be a problem, risk factors for celiac disease, and who is at risk for celiac disease.
2:20-2:45 PMPanel 3 Video and Discussion
Video: “Celiac Disease Genetic Testing” with Dr. Annette Taylor
Antibody and genetic testing, gluten stool and urine testing, and the genetics of celiac disease.
2:50-3:20 PMPanel 4 Video and Discussion
Video: “Introduction to Drug Development” with Dr. Dan Adelman
Celiac disease clinical trials and studies, the drug development pipeline, and patient engagement in research.
3:25-3:55 PMPanel 5 Video and Discussion
Video: “The Gluten-Free Diet: Beyond the Basics” with Janelle Smith, RD
Gluten-free food labeling and certification, cross-contact with gluten, shared facility processing, dining out with celiac disease, and hidden gluten ingredients.
3:55-4:05 PMBreak
4:05-4:35 PMPatient Advocate Activity
Small group breakout session to determine the research topics CDF should pursue.
4:35-5:30 PM – Patient Advocate Mentor Program
Empowered Patient Advocates will be trained as Mentors to develop a core group of patients/stakeholders to support the expansion of the Patient Advocacy Program and enhance and extend its impact.

*All panels will be moderated by Michael Karp, MD, Chief of the Division of Geriatrics, Hospital, Palliative Care, and General Internal Medicine within the Department of Medicine at USC, and Janelle Smith, CDF Registered Dietitian Nutritionist.

What else do I need to know?

To be confirmed as a Celiac Disease Foundation Patient Advocate, you must:

  • Register for the Patients As Partners Research Symposium
  • Complete the two surveys included in your Symposium registration confirmation email
  • Participate in the in-person research activity at the Symposium
  • Complete the Understanding Checks and Post Assessment at the Symposium

Patients As Partners Research Symposium registration ($35) includes a two-day pass to the Gluten-Free EXPO on June 3 and 4, and a swag bag filled to the brim with gluten-free goodies. Check in for the Symposium at the Research Symposium booth in the Pasadena Convention Center anytime between 9:30 AM and 12:30 PM on Saturday, June 3, 2017. Arrive early to enjoy the EXPO before the Symposium.

For travel and lodging information, click here.

Not interested in becoming a Patient Advocate? You need only register for the Research Symposium.

With questions, contact Talia Machlouf at talia.machlouf@celiac.org or 818-716-1513, x110.

*Research Symposium attendees must be 18 years or older.

This training curriculum was funded through a Patient Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (2643-CDF).