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Beyond Celiac Announces Innovative Collaborative Research Effort: Go Beyond Celiac Digital Community
https://www.celiac.com/articles/24345/1/Beyond-Celiac-Announces-Innovative-Collaborative-Research-Effort-Go-Beyond-Celiac-Digital-Community/Page1.html
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Published on 09/5/2017
 

Beyond Celiac has launched Go Beyond Celiac™, a digital community that will accelerate treatment options beyond the gluten-free diet. 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 to participate in research themselves.


Research shows that the gluten-free diet is not enough.

Beyond Celiac has launched Go Beyond Celiac™, a digital community that will accelerate treatment options beyond the gluten-free diet. 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 to participate in research themselves.

"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 the connection to gluten was discovered some 70 years ago. We deserve better and Go Beyond Celiac will speed our progress."

Research shows that the gluten-free diet is not enough. Beyond Celiac Board Member Ciaran P. Kelly, MD, and 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. Further, people with celiac disease report a very high burden of disease, comparable to end stage renal disease." In a recent Beyond Celiac survey, 71% of respondents report getting glutened at least occasionally, and more than a quarter of them get so sick that their ability to carry out every day activities is severely impaired.

Through Go Beyond Celiac people can share:

  • Experiences before, during and after diagnosis
  • Past and current symptoms
  • Psychological, emotional, and economic impacts of living with celiac disease

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 may qualify and in which they may wish to participate.

Contact: Claire Baker, Director of Communications, cbaker@BeyondCeliac.org

Visit our site for more details.