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Beyond Celiac Celebrates Record Accomplishments in 2020

January 14, 2021

Catalyst for a Celiac Disease Cure, Beyond Celiac Advances Research by Becoming Patient Recruitment Partner of Choice for Major Clinical Trials

PHILADELPHIA (Jan. 13, 2021) – Beyond Celiac, the leading catalyst for a celiac disease cure in the United States, partnered with a record number of key biotechnology and pharmaceutical companies in 2020 to recruit patients for clinical trials of promising treatments for celiac disease. 

The organization continued to be a vital bridge between the celiac disease community and researchers to power progress. Recent partnerships include:

  • Exclusive recruitment partner for the 9 Meters Biopharma study of larozotide acetate, which aims to address leaky gut in celiac disease. This is the first-ever celiac disease clinical trial to reach Phase 3. Designed to tighten junctions between intestinal cells, larazotide acetate would act like shoelaces to help restore leaky junctions to a normal state.
  • Clinical trial recruitment for Provention Bio, Inc.’s Phase 2b PROACTIVE (PROvention Amgen Celiac ProtecTIVE) study of PRV-015 (an anti-interleukin-15 monoclonal antibody). This novel approach is designed to block interleukin-15, a cytokine that plays a central role in celiac disease, creating inflammation and intestinal damage.
  • Partnering with Kanyos Bio, a wholly-owned subsidiary of Anokion SA, to recruit patients for the ACeD (Assessment of KAN-101 in Celiac Disease) Study. Currently in a Phase 1 clinical trial, KAN-101 has the potential to induce immune tolerance to gluten. 

“Beyond Celiac has an extensive connection with our celiac disease community, and we are committed to making sure those patients’ experiences shape what researchers study and how they study it ,” said Beyond Celiac CEO Alice Bast.  “That insight and patient participation is imperative to the success of the drug development pipeline that is going to bring us to the treatments and a cure we know are possible.” 

Patient recruitment efforts are led by the unrivaled ability Beyond Celiac has to reach celiac disease patients who are interested in participating in clinical trials. Go Beyond Celiac, an online patient database launched in 2017, allows its thousands of users to participate in research by sharing their celiac disease stories and experiences and learn how to become involved in research studies.

Beyond Celiac also added two innovative leaders to the organization in 2020. Salvatore (Salvo) Alesci, MD, PhD, serves as Chief Scientist and Strategy Officer (CSSO) and Ken Kilgore, PhD, MBA, is Chief Scientific Investment Officer (CSIO). In addition to having exceptional scientific credentials, backgrounds, and experience, both have a family connection to celiac disease. Finding solutions to help patients and their families overcome the burden of this disease has become both a personal and professional goal for them.

One of their key 2020 accomplishments was a partnership with the National Minority Quality Forum (NMQF), a research and educational organization dedicated to ensuring that high-risk racial and ethnic populations and communities receive optimal health care. Beyond Celiac and NMQF announced they will be working together over the next several years to examine and address health inequities in the diagnosis and treatment of celiac disease. 

“Part of our mission as a cure accelerator for celiac disease is making sure our work is benefiting the whole patient community,” said Alesci. “That means identifying those who may not be getting properly diagnosed, who may not have access to gluten-free foods and those who are not being represented in clinical trials for new treatments. Living in a world beyond celiac disease means finding those who may be slipping through the cracks.” 

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 if left untreated, can lead to serious long-term health problems including infertility and some types of cancer.

About Beyond Celiac

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.



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