Celiac Disease Foundation Receives $250,000 PCORI Award for Patient Participation in Research

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Training program for patients and caregivers will be offered at Celiac Disease Foundation’s National Conference April 30, 2016.

In 2016, Celiac Disease Foundation (CDF) continues to push researchers to investigate what is most important to patients when it comes to celiac disease potential treatments and cures. An award from the Patient-Centered Outcomes Research Institute (PCORI) is helping this effort. The PCORI Eugene Washington Engagement Award allows CDF to train patients and caregivers to become more involved in research in ways that will impact the treatment of their disease, by creating a national network of advocates trained in patient-centered outcomes research (PCOR), known as the Patient Engagement Celiac Disease Network (PECDN).

While patients and caregivers are eager to participate in research, many feel unprepared when working with researchers. Researcher expectations and usage of medical lingo can be intimidating. The goal of the PECDN is to break down those barriers by training patients and caregivers to feel confident, prepared, and ready to engage in PCOR. The intent of this training is to provide the knowledge and tools needed to be active partners in PCOR, not to merely fill a traditional, passive patient or study subject role.

The PEDCN is part of a comprehensive effort by CDF to meet the public health challenge of increasing the diagnosis of and improving treatments for celiac disease and other gluten-related disorders, while working toward a cure. Immediate projects in which PECDN advocates may participate include serving on the steering committees for research projects at USC and UCLA Medical Centers, and the iCureCeliac Patient-Powered Research Network.

The PECDN will kick off with a pilot workshop at Celiac Disease Foundation’s National Conference on April 30, 2016 at the Pasadena Convention Center in California. PECDN participants will receive a stipend upon workshop completion. Participants will evaluate the training program and become the first cohort of PECDN advocates, so that lessons learned may inform the additional 10 workshops planned throughout the country in 2016 and 2017.

To apply to be a PECDN pilot workshop participant, please email info@celiac.org