Note from Alice: Uncovering Diversity & Disparity in Celiac Disease
Have you ever worked on a project for a very long time and the fruits of your labor come to fruition? Well, I am thrilled to share the fruits of our labor with you that Beyond Celiac is the exclusive celiac disease community partner joining with 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. Together we will 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, our two organizations will investigate the extent of undiagnosed celiac disease, particularly among non-Caucasians, and we will use extensive research of underserved populations to inform development of interventions focused on the needs of all patients, including Black, Hispanic, Asian and underserved populations. This will help us 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. If you have any suggestions on the subject, we would love to hear from you.
You see, the NMQF comprehensive database is vast, comprising 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 of Beyond Celiac, will provide a unique resource to increase awareness, improve clinical practice, expand research and ultimately improve health outcomes among underserved populations with celiac disease.
This work is vital to ensuring that we are working toward a world in which all Americans with celiac disease can live healthy lives, free from social stigma and fear of gluten exposure.
To help facilitate projects like this that make life better for the entire celiac disease community and bring us closer to treatments and a cure, please consider giving today at support.beyondceliac.org/stillhere. Between now and December 15th, all gifts will be matched dollar for dollar, but to $20,000, so your gift will go twice as far!
Together (apart) for a cure,