Beyond Celiac, the leading patient advocacy organization focused on accelerating development of treatments and a cure for celiac disease, has launched a multi-stakeholder coalition to advance clinical research in celiac disease. Members include top representatives from pharmaceutical, biotech and diagnostic companies as well as leading researchers and clinicians in the field, including such participants as Takeda; Provention Bio; Anokion; imaware™ at-home health testing; Marisa Stahl, MD and Edwin Liu, MD of Children’s Hospital Colorado; and Adam C. Stein, MD of Northwestern University Feinberg School of Medicine and more.
Beyond Celiac formed this precompetitive partnership with the overarching goal of addressing significant roadblocks on the path to a cure for celiac disease, with a particular emphasis on breaking down barriers to patient engagement in clinical trials. “Strategic partnerships are a key enabler of our science plan,” said Salvo Alesci, Beyond Celiac Chief Scientific Strategy Officer. “Accelerating research into treatments for celiac disease will only happen through the concerted effort of many strong, committed partners.”
The coalition is designed to be broadly inclusive, and more members are continuing to join this important work. Members of the coalition will share expertise, resources, and funding, designing short- and longer-term projects to make advancements toward a cure in a collaborative setting. The coalition will start by sponsoring two initiatives:
- A systematic analysis of perspectives of patients, sponsors, and clinical research sites regarding the barriers to and facilitators of clinical trial recruitment and retention.
- The development of best practices (i.e., guidance, toolkits, etc.) for adult and pediatric celiac trials to increase patient participation and satisfaction.
These and future projects will be informed by a continuous dialogue between representatives of the healthcare industry, researchers and the Beyond Celiac community of patients, caregivers and consumers.
Celiac disease is a serious genetic autoimmune disorder that affects an estimated 1 in 133 Americans, more than half of whom are still undiagnosed. The disease causes damage to the small intestine, resulting in debilitating symptoms, and can lead to serious long-term health problems including infertility and some types of cancer.
“With this precompetitive partnership, we are all working together to advance breakthroughs in celiac disease and ultimately help our community live longer, better,” notes Alice Bast, CEO of Beyond Celiac. “The celiac disease community understands that a treatment beyond the gluten-free diet is necessary. This coalition will move the field of celiac disease forward, continuing to elevate the voices of patients so we can live our lives to the fullest, eat without fear and be protected against the long-term health consequences that celiac disease can bring."
Founded in 2003, Beyond Celiac is the leading catalyst for a celiac disease cure in the United States, serving as a patient advocacy and research-driven organization working to drive diagnosis and accelerate the discovery of new treatments. By engaging with the top scientists in the field, making the right investments in research and supporting the broad community of those with celiac disease and gluten sensitivity, Beyond Celiac envisions a world in which people can live healthy lives and eat without fear – a world Beyond Celiac. www.BeyondCeliac.org.