PHILADELPHIA, PA — Beyond Celiac, the leading catalyst for a celiac disease cure in the United States, announced it is presenting at the upcoming DIA 2021 Global Annual Meeting on June 28 alongside the National Minority Quality Forum (NMQF). Salvo Alesci, MD, Chief Scientist and Strategy Officer of Beyond Celiac and Mary Stober Murray, MPH, NMQF Vice President of Collaborative Action Networks will address underdiagnosis as a factor in many diseases, especially for racial and ethnic minorities. The panel will discuss systemic reasons for these challenges and quantitative data-mining approaches to solve them.
“The problem of underdiagnosis is complex and embedded in health care systems and society,” said Alesci. “The burden of connection does not lie with the patient. Patient engagement strategies need to work in tandem with Health IT to identify and include these underdiagnosed populations.”
These issues are at the heart of why Beyond Celiac and NMQF, a research and educational organization dedicated to ensuring that high-risk racial and ethnic populations and communities receive optimal health care, forged an ongoing partnership last fall to examine and address health inequities in the diagnosis and treatment of celiac disease. This spring they co-hosted a virtual Town Hall discussion on diversity and disparity in celiac disease to further the conversation.
In addition to increasing awareness of the prevalence of celiac disease in the U.S. across various demographic groups, the two organizations are investigating the extent of undiagnosed celiac disease, particularly among non-Caucasians. They are using extensive research of underserved populations to inform development of interventions focused on the needs of all patients, including Black, Hispanic, Asian and underserved populations.
“Finding underdiagnosed populations requires approaches where trust meets data,” Murray explained. “We need more organizations with similar goals and complementary expertise sharing resources to strengthen trust and develop data.”
Celiac disease is a serious genetic autoimmune disorder that affects an estimated 1 in 133 Americans, more than half of whom are still undiagnosed. The disease causes damage to the small intestine, resulting in debilitating symptoms, and if left untreated, can lead to serious long-term health problems including infertility and some types of cancer.
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