PHILADELPHIA (APR 10 2023) – Beyond Celiac, the leading catalyst for a celiac disease cure in the United States and premier nonprofit funder of celiac disease research worldwide, will have findings from two research projects presented at Digestive Disease Week (DDW), the largest international gathering of physicians, researchers and academics in the fields of gastroenterology, hepatology, endoscopy and gastrointestinal surgery.
The research will be presented as two posters. One, “Frustration, fear, and luck — Factors facilitating celiac disease diagnosis and support seeking behaviors: A Go Beyond Celiac analysis,” is based on data from the Go Beyond Celiac patient registry and is being presented by Beyond Celiac Associate Science Project Manager Erin Miller, MPH. The other, “Correlations between relative prevalence of celiac disease and sociodemographic variables in the United States,” is based on the Celiac Index, created by Beyond Celiac in conjunction with the National Minority Quality Forum (NMQF), and is being presented by Haley M. Zylberberg, MD, a gastroenterology fellow at Columbia University who analyzed the NMQF data.
“The abstracts highlight the importance of demographic research along with patient-reported outcomes in the understanding and management of celiac disease,” noted Beyond Celiac Chief Science and Strategy Officer Salvo Alesci, MD. “With more than 8,000 patients participating in our registry, we are able to get and share a more complete picture of how a person presents and ultimately gets diagnosed with celiac disease, its complexity and disparities, which will ultimately accelerate the rate by which people get answers,” he added.
“Partnerships are key,” noted Alice Bast. “By joining forces with the NMQF, we are finding that there are variables that are influencing diagnosis that are not related to symptoms, and that needs to change. When we say ‘together for a cure,’ we mean everyone. And we are now more able to paint a fuller picture of who does not have equal access to good health choices, healthcare and health outcomes,” she added.
The posters will be presented on May 9, 2023, after which time the findings of the research will be shared more broadly.
Founded in 2003, Beyond Celiac is the leading catalyst for a celiac disease cure serving as a patient advocacy and research-driven organization working to drive diagnosis and accelerate the discovery of new treatments. By engaging with the top scientists in the field, making the right investments in research and supporting the broad community of those with celiac disease and gluten sensitivity, Beyond Celiac envisions a world in which people can live healthy lives and eat without fear – a world Beyond Celiac.
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