In order to secure increased federal investments in celiac disease research, a group of Celiac Disease Foundation staff members, advocates, and I began a series of detailed conversations in 2019 with key Members of Congress and the leadership of the National Institutes of Health (NIH). We learned that a better understanding of the gaps in existing celiac disease research that were impeding progress toward finding treatments and a cure was needed. While surveying the leading celiac disease researchers to determine this conclusion, it became clear that the Foundation needed to convene a meeting to develop a consensus to identify and prioritize high-yield areas of research.

In March of 2020, the Celiac Disease Foundation, in partnership with the Society for the Study of Celiac Disease (SSCD), convened the first SSCD Consensus Workshop: “Research Opportunities in Celiac Disease” at Columbia University. At the Consensus Workshop, the world’s leading celiac disease researchers gathered and debated what a research Roadmap to treatments and a cure would look like. Also in attendance was a member of the leadership team from NIH’s National Institute of Allergy and Infectious Diseases.

I am pleased to share with you the Roadmap developed at the Consensus Workshop which was just published in a leading journal, Nature Reviews Gastroenterology and Hepatology.

You can download and read the entire article here. The key findings are summarized below:

  • Celiac disease is a common and serious medical condition that is under-recognized among the healthcare provider community, government and the public. 
  • The Roadmap summarizes consensus recommendations to address gaps and opportunities in pathogenesis, diagnosis, and management of celiac disease. 
  • Various animal models are available to translate hypotheses generated from human studies, and progress is being made in the development of physiological celiac epithelial models based on organoid technology.
  • Celiac-specific serology is highly reliable for the diagnosis of celiac disease; however, there is disagreement between experts as to the necessity of intestinal biopsy to confirm the diagnosis. 
  • There is an increasing need for development of programs for proper clinical management of celiac disease, and the number of potential therapeutic targets and clinical trials has grown exponentially over the past 15 years.
  • Increased funding for celiac disease research is crucial to improve clinical management and facilitate development of therapies for this condition.

The article also noted that “the morbidity of coeliac disease is often underestimated, which has led to an unmet need to improve the management of these patients.”

The Consensus Workshop accomplished everything we hoped for. The Roadmap informed our presentations at the May 2020 NIH Autoimmune Diseases Coordinating Committee meeting, the March 2021 NIH Accelerating Progress in Celiac Disease Workshop, and the July 2021 GREAT VI Workshop on Celiac Disease.

All of this work, supported by Members of Congress at every step, has led to this: NIH has reported to Congress its intention to issue a Notice of Special Interest funding opportunity for celiac disease, targeting much needed federal research dollars to the disease. NIH has also promised to implement new tools to track agency-wide funding of celiac disease research. 

This is a great start, but with your help we have a lot more to do. We are working with the recently formed Congressional Celiac Disease Caucus to continue to implement the Roadmap and look forward to keeping you informed of our progress.

I would also like to share that one of the authors of this article, Dr. Jocelyn Silvester of Boston Children’s Hospital and Harvard University, has agreed to talk to friends of the Foundation on October 13 about exciting developments in pediatrics and celiac disease research. You can learn more about this event and register here.

Finally, your sustained and generous support is helping us do what must be done to accelerate research for treatments and a cure. Thank you!

To Our Health,

Marilyn Geller
Chief Executive