Beyond Celiac Announces Innovative Collaborative Research Effort: Go Beyond Celiac digital community
PHILADELPHIA (SEPTEMBER 5, 2017) – Beyond Celiac today announced the launch of Go Beyond Celiac™, a digital community that will enable Beyond Celiac to accelerate treatment options by engaging people with celiac disease, creating an online portal to amass critical data that are not uniformly collected and curated today, including qualitative data about the experience of living with celiac disease, the path to diagnosis and disease management. Go Beyond Celiac is designed to make it easier for people with celiac disease to share their stories at a population level with researchers and participate in research, including clinical trials.
“Each person’s experience of celiac disease is unique, from the symptoms a person has before diagnosis to how the disease responds to the gluten-free diet. A rich dataset of patients’ journeys would help researchers focus on the important questions whose answers could ultimately improve the lives of those with the disease,” notes Jake Hughey, PhD, a researcher at Vanderbilt University Medical Center who has celiac disease himself.
When diagnosed with celiac disease, a patient is typically told the gluten-free diet is a cure for the autoimmune disease. However, that’s far from the truth. In fact, the gluten-free diet is an unreliable and incomplete treatment. In a recent Beyond Celiac survey, 20% of survey respondents said they have symptoms of gluten exposure at least once a month. Ciaran P. Kelly, MD, Beyond Celiac Board Member and the Director of the Celiac Center at Beth Israel Deaconess Medical Center/Professor of Medicine at Harvard Medical School notes, “At least 10 percent of those with celiac disease who follow a gluten-free diet have ongoing or recurrent celiac disease-related symptoms or signs and physicians are not sure why that is whether it is continued exposure or other causes.” Further, people with celiac disease report a very high burden of disease, comparable to end stage renal disease. In one study, 25% of patients stated that the diet is so burdensome they regretted being diagnosed and would rather have continued having symptoms.
Go Beyond Celiac will capture patient data, including:
Go Beyond Celiac also provides personalized interaction between community members and creates opportunities for dialog to identify unmet needs and opportunities for improved diagnoses, treatments, and to help our community live life to the fullest.
“My son Mitchell was diagnosed with celiac disease after four years of being told that he had a very rare condition called Periodic Fever Syndrome. He suffered needlessly from the ages of 10-15 and missed out on so much. We had been all over the country searching for answers for him, even after doctors gave up and labeled him a psych case because they couldn’t figure it out. Finally getting a definitive celiac disease diagnosis was such a relief. Your organization was one of the first we turned to for information. Support for research that will be accelerated through Go Beyond Celiac will spare other families from many hours and much heart ache.”
Go Beyond Celiac will also include a secure, one-of-a-kind celiac disease registry that will keep the community up to date on the latest in medical research and available clinical trials for which they qualify and in which they may wish to participate. In addition, the Go Beyond Celiac registry will be used to assist researchers in pre-screening and recruiting potential participants, reducing a barrier to successful research, accelerating opportunities to improve diagnosis rates, and helping people with celiac disease cope with this serious genetic autoimmune disorder.
In addition, Beyond Celiac also announced that on November 9th, the organization will host the first ever Bold Beyond Research Symposium , bringing together noted researchers, clinicians and community members to explore the current state and future directions of celiac disease research. The Symposium, which will be held on the Drexel University campus and also webcast to a live audience worldwide, is planned to spur dialogue about research-community partnerships and drive celiac disease community involvement through Go Beyond Celiac.
The Bold Beyond Research Symposium, moderated by Alice Bast, Beyond Celiac CEO, will consist of a live panel presentation and discussion, featuring:
Ciaran P. Kelly, MD, Director, Celiac Center and Director, Gastroenterology Fellowship Training, Beth Israel Deaconess Medical Center; Professor of Medicine, Harvard Medical School
Anthony J. DiMarino, Jr., MD, Chief, Division of Gastroenterology & Hepatology, Thomas Jefferson University Hospital
Ritu Verma, MD , Section Chief, Gastroenterology, The Children’s Hospital of Philadelphia; Associate Professor of Clinical Pediatrics, Perelman School of Medicine at the University of Pennsylvania
“The gluten-free diet is an incomplete and unreliable treatment, and yet it’s all we’ve got,” says Alice Bast, CEO of Beyond Celiac. “No other options have been developed since gluten was identified as the culprit in celiac disease some 70 years ago. We deserve better. We need a 21st century research agenda and Go Beyond Celiac and the Research Symposium are designed to speed our community’s progress.” People with celiac disease are invited to join Go.BeyondCeliac.org to participate in advancing research in the field. For more information about attending the Bold Beyond Research Symposium either in the live audience or via webcast, visit www.BeyondCeliac.org/BoldBeyondSymposium.
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