Beyond Celiac Launches Digital Community

Beyond Celiac, the national non-profit celiac-advocacy organization based in the Philadelphia suburbs, today announces the launch of Go Beyond Celiac, a digital community that will enable the group to accelerate treatment options by engaging people with celiac disease, creating an online portal to curated 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, Ph.D., a researcher at Vanderbilt University Medical Center who has celiac disease himself.

Go Beyond Celiac will capture patient data, including:

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

The program 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.

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.

Interested participants can get more information at the Go Beyond Celiac portal, which includes a FAQ section. Participant information is private and secure; Beyond Celiac has technology and processes in place to keep participant information private and secure. Before any information is shared with researchers, any information that identifies individuals is removed (like name and email address, for example).