Unique Partnership Aims to Shine Spotlight on Disparity in Diagnosis of the Autoimmune Disorder and Build a New Equitable Path Forward
Beyond Celiac Town Hall: A Conversation with National Minority Quality Forum (NMQF), Uncovering Diversity and Addressing Disparity in Celiac Disease, featuring Mary Stober Murray, MPH, NMQF Vice President of Collaborative Action Networks and Salvatore Alesci, MD, PhD, Beyond Celiac Chief Scientist and Strategy Officer. This Town Hall was sponsored by Kanyos Bio, Inc. (a wholly-owned subsidiary of Anokion SA).
Beyond Celiac, the leading patient organization and catalyst for a celiac disease cure in the U.S., and the National Minority Quality Forum (NMQF), a research and educational organization dedicated to ensuring that high-risk racial and ethnic populations and communities receive optimal health care, announced a newly forged partnership to examine and address health inequities in the diagnosis and treatment of celiac disease.
In addition to increasing awareness of the prevalence of celiac disease in the U.S. across various demographic groups, the two organizations will investigate the extent of undiagnosed celiac disease, particularly among non-Caucasians. They will use extensive research of underserved populations to inform the development of interventions focused on the needs of all patients, including Black, Hispanic, Asian and underserved populations.
“Part of our mission as a cure accelerator for celiac disease is making sure our efforts are benefiting the whole patient community,” said Salvo Alesci, MD, Chief Scientist and Strategy Officer of Beyond Celiac. “We need to identify those who are slipping through the cracks of diagnosis, who don’t have access to gluten-free foods and who are not being represented in clinical trials for new treatments. Only then can we be truly effective in our mission for all to live in a world beyond celiac disease.”
Through this partnership, Beyond Celiac will build and become the exclusive community manager for a Celiac Disease Index and Learning Community, leveraging NMQF’s user-friendly digital platform to analyze and visualize data from celiac disease medical claims.
The NMQF comprehensive database comprises more than 5 billion patient records, which it uses to define disease prevalence, costs and outcomes for demographic subpopulations at the ZIP code level. The resulting visual maps, paired with the combined science and advocacy “power engine” of Beyond Celiac, will provide a unique resource to increase awareness, improve clinical practice, expand research and ultimately improve health outcomes among the underserved population with celiac disease.
“We are excited about the partnership with Beyond Celiac. NMQF works from the fundamental principle that the prime directive of our healthcare system is to reduce patient risk,” said NMQF CEO and President Gary A. Puckrein, PhD. “We seek out partnerships where risk mitigation for patients is the driving purpose. Beyond Celiac and NMQF are aligned on their commitment to improve outcomes for patients living with celiac disease.”
Celiac disease is a genetic autoimmune disorder that affects an estimated one in 133 Americans, more than half of whom are still undiagnosed. The disease causes damage primarily to the small intestine, resulting in debilitating symptoms. If left untreated, the disease can lead to serious long-term health problems, including infertility and some types of cancer. There is currently no cure or treatment for celiac disease other than adherence to a strict gluten-free diet.
About Beyond Celiac
Founded in 2003, Beyond Celiac is the leading catalyst for a celiac disease cure in the U.S., serving as a patient advocacy and research-driven organization working to drive diagnosis, advance research and accelerate the discovery of new treatments. By engaging with top scientists, making strategic 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. www.BeyondCeliac.org
About National Minority Quality Forum
The National Minority Quality Forum assists health care providers, professionals, administrators, researchers, policymakers, and community and faith-based organizations in delivering appropriate health care to minority communities. This assistance is based on providing the evidence in the form of science, research, and analysis that will lead to the effective organization and management of system resources to improve the quality and safety of health care for the entire population of the United States, including minorities. www.nmqf.org