In order to secure increased federal investments in celiac disease research, the Celiac Disease Foundation 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 Celiac Disease Foundation needed to convene a meeting to develop a consensus to identify and prioritize high-yield areas of research.

In March of 2020, the 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.

The Consensus Workshop accomplished everything we hoped for. A Research Roadmap was developed that 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.

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