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

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

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Celiac Disease Foundation Patient Engagement Celiac Disease Network

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 goals of the PECDN, in conjunction with iCureCeliac and other PCORI-funded CDF projects, are timely and critical in equipping patients with tools to propel celiac disease research toward a cure,” says Marilyn G. Geller, Celiac Disease Foundation Chief Executive Officer.

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 towards a cure. PECDN advocates are also encouraged to share their research ideas online through MOSAIC, a crowdsourcing software platform to develop research studies with input from patients and their families, disease advocates, researchers, and healthcare providers, hosted by UCSF.

“This project was selected for Engagement Award funding not only for its commitment to engaging patients and other stakeholders, but also for its potential to increase the usefulness and trustworthiness of the information we produce and facilitate its dissemination and uptake,” said Jean Slutsky, PCORI’s Chief Engagement and Dissemination Officer. “We look forward to following the project’s progress and working with Celiac Disease Foundation to share the results.”

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 workshops planned throughout the country in 2016 and 2017. Patients and caregivers are encouraged to apply by April 15th to be a PECDN pilot workshop participant. For more information contact info(at)celiac(dot)org.

About Celiac Disease Foundation

Celiac Disease Foundation (CDF) was established as a 501(c)(3) non-profit organization in 1990 to improve the quality of life for all individuals impacted by celiac disease and other gluten-related disorders. Affecting 1% of the world’s population and with a prevalence doubling every 15 years, celiac disease is both a serious genetic autoimmune disorder and a growing public health challenge. Despite a simple blood screening test, only one in six celiac disease sufferers is diagnosed, leaving millions at risk for long-term health complications including Type 1 diabetes, thyroid, liver and heart disease, and intestinal cancers. CDF leads the fight to increase the rate of diagnosis, to improve treatments, and to find a cure. Learn more about Celiac Disease Foundation at celiac.org.

About PCORI

The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work.

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Talia Hassid
Celiac Disease Foundation
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