Research Update: Icureceliac Patient Registry Leads to New Research Findings

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With your generous support, we invest heavily in celiac disease research to accelerate diagnosis, the development of treatments, and a cure. One of our most important research investments over the last several years has been in iCureCeliac®, the nation’s leading celiac disease patient registry. Again and again, iCureCeliac® has helped researchers from around the world develop a greater understanding of celiac disease, leading to investment in promising interventions and therapeutics.

In October, researchers published three important studies about celiac disease that used the iCureCeliac® patient registry database as the data source. I am pleased to be able to share these studies with you.

The first study was published in the Journal of American Medical Association (JAMA) and is titled Prevalence of Dermatitis Herpetiformis Within the iCureCeliac Patient-Powered Research NetworkPatient Characteristics and Dietary Counseling. Results of the University of Pennsylvania study showed patients with dermatitis herpetiformis (DH) were less likely to recall receiving counseling on a gluten-free diet at the time of diagnosis when compared with patients with celiac disease but without DH. This is likely because only 20% of patients diagnosed with DH present with classic GI symptoms associated with celiac disease at the time of diagnosis. As well, most DH diagnoses are made by dermatologists who may lack appreciation of the need to offer counseling on the gluten-free diet. As a result, DH patients who fail to adopt a strict glutenfree diet within the first 5 years of diagnosis may have an increased risk of mortality from lymphoma in this period of time.

The second study, Disease burden and quality of life impacts in patients with celiac disease on a gluten-free diet: an analysis of the iCureCeliac registry, was presented as a poster at the United European Gastroenterology Week Virtual 2020 Congress, October 11-13, 2020 and at the American College of Gastroenterology 2020 Virtual Annual Scientific Meeting, October 23-28. Authored by researchers from Takeda Pharmaceuticals and the Celiac Disease Foundation, the study presents compelling evidence that, ‘despite gluten-free diet adherence, many patients with celiac disease still have symptoms that substantially impact their lives. This was seen for all patients but was most pronounced for those with higher symptom burden, highlighting the heterogeneity of celiac disease burden and need for further therapies beyond a gluten-free diet.’ Takeda currently has two celiac disease drugs in development, TAK-101, which is designed to promote immune intolerance, and TAK062, which works by enzymatically digesting gluten. Findings from iCureCeliac® continue to substantiate the need for treatment alternatives to a gluten-free diet.

Probiotics Use in Celiac Disease: Results from a National Survey, the third study, is also currently being presented at ACG 2020 Virtual and is an Outstanding Poster Presenter recipient. Led by Andrew Joelson, MD, Gastroenterology Fellow at the Celiac Disease Center at Columbia University, the study examined probiotic use in the Foundation’s iCureCeliac® patient registry population finding that about one-third of patients reported using probiotics to treat persistent symptoms. Patients on a gluten-free diet who were still experiencing symptoms were twice as likely to use probiotics as patients who reported controlled symptoms. This is the Celiac Disease Foundation’s fifth collaboration with Dr. Joelson and his team at Columbia University since 2017 with iCureCeliac® data demonstrating the serious burden of celiac disease.

As always, we thank you for your generous support that makes our work possible.

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Marilyn G. Geller, Chief Executive
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