SPECIAL OPPORTUNITY
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 help design and evaluate celiac disease research?
Then we need you!

CLICK HERE TO APPLY TO BE A SOLVING CELIAC DISEASE TOGETHER WORKSHOP PARTICIPANT AND RECEIVE $100

Celiac Disease Foundation’s Patient Engagement Celiac Disease Network (PECDN) is recruiting patients and caregivers to participate in and evaluate the program at the 2016 National Conference & Gluten-Free EXPO.

What is patient engagement in 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. The National Institutes of Health (NIH) also has opportunities for patient advocates to evaluate grant proposals.

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 makes this a pilot program?

We are launching this program April 30, 2016, so the first group of patients will have a unique and extremely important role – to help design the curriculum and support program for celiac disease research advocates. Your ideas, suggestions, concerns, interests, and insights will provide a framework for developing a world-class patient advocate-training program.

What is expected of me?

We need committed and enthusiastic participants who want to do more than show up for a day.

Prior to the April 30th workshop, participants are expected to:

  • Register for the CDF National Conference & Gluten-Free EXPO
  • Participate in a one hour-long webinar
  • Complete a detailed questionnaire

At the April 30th workshop, participants are expected to:

  • Attend a breakfast orientation
  • Attend the day-long science-focused Conference
  • Complete a detailed evaluation of each part of the Conference
  • Participate in a late afternoon workshop on patient-centered outcomes research

 

After the April 30th workshop, participants are expected to:

  • Complete an interview with someone on the program design team
  • Complete a detailed program evaluation

What else do I need to know?

  • Participants must be registered for the CDF National Conference & EXPO
  • Join with CDF Board Members and Conference Speakers at a Welcome Dinner at 7pm on Friday, April 29th
  • Saturday, April 30th breakfast and lunch are included
  • Participants will enjoy a private tour of the EXPO Hall
  • Participants who complete the program will receive a $100 stipend

How do I sign up?

This is not a sign-up event; this first pilot program is limited in size to ensure quality, so you will need to apply for a space. But the application is very simple, and you will learn within a week if you have been selected.

Register for the CDF National Conference & Gluten-Free EXPO. Next Download and Submit your completed  Workshop Application no later than April 10, 2016 to talia.hassid@celiac.org, by fax to 818.267.5577, or by mail to Celiac Disease Foundation, 20350 Ventura Blvd., Ste. 240, Woodland Hills, CA 91364.

Participants will be selected on a first come, first served basis and will be notified of their selection by April 20, 2016 at the latest.

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