Note from Alice: 3 Critical Ways Beyond Celiac Propelled Us Closer to a Cure This Year
Last October, Beyond Celiac planted its stake in the ground that we would drive research for treatments toward a cure by 2030. Today, I want to share with you three of our big accomplishments from the last 12 months and why we have, with your support, taken each challenge on.
1. We’ve made major investments in moving research more quickly from the lab straight to you.
Through this work, we’re advancing the research process so that the benefits can reach our community more quickly and they can eat without fear.
We are directly investing $1.5M in a number of research projects that we hope will lead to strategies to identify celiac disease earlier, reveal that celiac disease affects much more than the gut, and propel the development of potential treatments for all symptoms, not just those GI-related, by understanding which cells to target.
Why it matters: Diagnosing earlier, understanding when and why celiac disease becomes active, development of a non-invasive diagnostic test, and understanding what the full impact of celiac disease is on various systems in the body will reveal significant clues to speed progress for treatments beyond the gluten-free diet. Better understanding of celiac disease may also enable us to prevent it from being triggered altogether. Investing in a variety of lines of inquiry gives us more “shots on goal”—approaching celiac disease from multiple directions will yield more chances to score and improve the lives of people in our community .
- We’ve taken a giant leap forward in finding where celiac disease is hiding.
Through this work, we’re revealing where missed diagnosis occurs to help remove obstacles from the regulatory process.
With our Health Disparities and Diversity Project and partnership with the National Minority Quality Forum, we are on the ground floor of identifying missed diagnoses based on geography, race and economic status. Early indications suggest that celiac disease diagnoses are frequently missed in large parts of the country, and within key racial and economic groups.
Why it matters: Everyone living with celiac disease deserves a fast and accurate diagnosis so that they can live longer, better. Further, as noted by the FDA, “Ensuring people from diverse backgrounds join clinical trials is key to advancing health equity.” The FDA is the regulatory body that determines if and how quickly potential treatments move along the process toward approval. It is important that we work to reduce and remove any obstacles, including lack of diversity in celiac disease clinical trials, from the regulatory process so that we can meet our goal of treatment options toward a cure by 2030.
- We’re speeding up clinical trials.
Through this work, we’re reducing barriers and accelerating participation in clinical trials.
With our Go Beyond Celiac patient registry and database and by working directly with clinical trial partners, Beyond Celiac has been able to connect hundreds of community members who are interested in and qualified for research projects to specific clinical trials.
Why it matters: In 2021, nearly a dozen different celiac disease treatments are in clinical trials—more than ever before—including the first-ever phase 3 clinical trial. Without input from our community, studies may not take into account issues that would prevent people from signing up. Without people with celiac disease who meet the criteria to participate, research slows and can even be halted. Beyond Celiac informs and connects, therefore speeding the process for treatments toward a cure.
We could not have come so far so fast without the commitment from our community, and for that I thank you. Together we face the challenge of staying healthy from day to day, and also make investments and commitments that will reap great benefits for the future. With you, we will continue to lead the charge for treatments and a cure. By supporting our work, you’re leaving your mark on a future Beyond Celiac.
Together for a cure,