Beyond Celiac Kicks off First-of-its-Kind Coalition to Accelerate Clinical Research in Celiac Disease

May 23, 2022

Biotech, pharma, and diagnostic industry come together with clinicians and scientists to overcome patient barriers in clinical trials

Beyond Celiac 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 participants such as Takeda; Provention Bio; Anokion; imaware™ at-home health testing; Marisa Stahl, MD and Edwin Liu, MD of Children’s Hospital Colorado; 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 clinical 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.”

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