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Prior to the FY2020 celiac disease report language from Congress, the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) was the National Institutes of Health (NIH) unit that was most responsible for the minimal celiac disease research that has been completed by NIH. The Celiac Disease Foundation met with NIDDK early this year at their headquarters and we were pleased with how responsive they were to our concerns about research funding. Recently, NIDDK issued a Request for Information (RFI) to the research and patient advocacy community as it begins a strategic planning process that is critical to setting its research agenda for the next decade. In collaboration with the Society for the Study of Celiac Disease (SSCD) we submitted our answers to their questions based upon our March SSCD Consensus Workshop on Celiac Disease and May NIH Autoimmune Disease Coordinating Committee presentations. Here is our response:


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Advancing understanding of biological pathways and environmental contributors to health and disease.

In March 2020 the Society for the Study of Celiac Disease (SSCD), supported by the Celiac Disease Foundation, convened a Consensus Workshop on ”Research Opportunities in Celiac Disease” at the Faculty House, Columbia University, New York City. After robust discussion and debate the assembled expert clinicians and researchers, patient advocates, pharma representatives and experts in non-celiac intestinal inflammatory disorders voted and agreed upon several research priorities pertaining to this category regarding celiac disease: (1) Understanding pathways and triggers leading to loss of tolerance to gluten, (2) Understanding the mechanisms of inflammation and tissue destruction, (3) Promote integration of mechanistic studies into clinical intervention trials, and (4) Perform pharmacoeconomic studies to establish the impact of celiac disease.


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Promoting participant engagement – including patients and other participants as true partners in research.

The Celiac Disease Foundation strongly promotes patient engagement in research and encourages that grant applications require patient advocate involvement in study design through the dissemination of findings. As a member of the PCORI Patient Engagement Advisory Panel and the recipient of two PCORI engagement awards, I have seen first-hand the impact in improving study and trial outcomes by including patients as true partners in research.


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Advancing research training and career development to promote a talented, diverse biomedical research workforce.

The Celiac Disease Foundation strongly promotes research training and career development awards for the study of celiac disease to eliminate the current financial barriers which have led to a limited researcher pool.


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Advancing pivotal clinical studies and trials for prevention, treatment, and cures in diverse populations.

In March 2020 the Society for the Study of Celiac Disease (SSCD), supported by the Celiac Disease Foundation, convened a Consensus Workshop on ”Research Opportunities in Celiac Disease” at the Faculty House, Columbia University, New York City. After robust discussion and debate the assembled expert clinicians and researchers, patient advocates, pharma representatives and experts in non-celiac intestinal inflammatory disorders voted and agreed upon several research priorities pertaining to this category regarding celiac disease: (1) Research on the critical checkpoints in disease pathogenesis that should be targeted for primary prevention, disease interception, or treatment interventions, (2) Understanding various immunological and clinical disease phenotypes, (3) Establish well-characterized adult and/or pediatric cohorts with clinical data and associated biobanked materials (blood, tissue, stools), (4) Evaluate the burden versus the benefit of screening for celiac disease in different populations, and (5) Validation of outcome measures for clinical research in celiac disease.


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Advancing dissemination and implementation research on strategies to identify, adapt, scale-up, and integrate evidence-based interventions in diverse settings and populations.

In March 2020 the Society for the Study of Celiac Disease (SSCD), supported by the Celiac Disease Foundation, convened a Consensus Workshop on ”Research Opportunities in Celiac Disease” at the Faculty House, Columbia University, New York City. After robust discussion and debate the assembled expert clinicians and researchers, patient advocates, pharma representatives and experts in non-celiac intestinal inflammatory disorders voted and agreed upon several research priorities pertaining to this category regarding celiac disease: (1) Accelerate development of experimental model (e.g., animal, human organoid, etc.), (2) Establish a collaborative network to enable “big science” in celiac disease through coordinated collection of clinical, genetic, microbiota and immunological data, (3) Establish standardized protocols and readouts for clinical and experimental gluten challenge, (4) Evaluation of novel methods and technologies to quantify mucosal injury including villous atrophy, (5) Establish a consortia/trial network to facilitate clinical trials in celiac disease, and (6) Hold a workshop with the NIH and other stakeholders on gaps in knowledge, research priorities, research milestones, and opportunities.


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Other comments and ideas

Celiac disease is a common, immune-mediated disorder, characterized by intestinal inflammatory injury with malabsorption and affecting approximately 1% of the population of the United States (and most of the world). Despite its high and rising population prevalence and its associated morbidities celiac disease has been under-represented in terms of NIH funding over recent years – a situation that should be addressed and corrected (see Clerx E, Kupfer SS and Leffler DA. Disparities Among Gastrointestinal Disorders in Research Funding From the National Institutes of Health. Gastroenterology 153:877-880). Treatment is available in the form of the gluten-free diet (GFD), but this therapy is not uniformly effective. Fifteen to 30% of patients following a GFD have persisting symptoms and signs of celiac disease activity and/or have persisting intestinal injury (as determined by histologic small intestinal villous atrophy). Furthermore, the GFD is burdensome and difficult to achieve with frequent inadvertent gluten ingestions. A small number of patients (1-2%) will develop refractory celiac disease despite strict adherence to the GFD. Refractory celiac disease is associated with especially high morbidity and risk for early mortality. Hence new treatments are needed for celiac disease. In recent years there has been a surge in the development and clinical testing of a variety of novel therapeutic interventions for celiac disease. However, there is as yet no proven or approved alternative to the GFD. We strongly encourage NIDDK to realign its activities in support of celiac disease research to more appropriately reflect the rich research opportunities that exist related to this autoimmune condition as well as the substantial unmet needs pertaining to this common, chronic and morbid intestinal disorder. Research funding for celiac disease can help to address the questions raised from the steadily increasing prevalence of the disease, the frequent problems of non-responsive and refractory celiac disease, the new general realization of the need for novel, non-dietary therapies and the opportunities for celiac disease to act as a model for tolerance inducing interventions. More celiac disease research is needed and warrants strong encouragement and support from NIDDK.


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