Go Beyond Celiac is an online community created by people with celiac disease, for people with celiac disease where patients and caregivers participate in research by sharing their stories and experiences and learning how they can join research studies. Researchers and doctors have identified that some of the most important information required to accelerate celiac disease research is missing: understanding how you have been impacted by celiac disease. Go Beyond Celiac provides you with the ability to tell researchers what life has been like before, during and after your diagnosis.

Here are the top 5 reasons to join today:

  1. Make sure that your voice is heard by the world’s leading celiac disease doctors and researchers who are working to change the future of disease management and treatment options.  
  2. Gain access to the most up-to-date news and information about celiac disease, how to manage it today, and the research that will lead to new treatments in the near future and, one day, a cure.
  3. Help to educate doctors, scientists, and others in the research community by sharing your own personal experiences and needs.
  4. Connect with other people affected by celiac disease and learn what you have in common or how your experiences may be different from other members of Go Beyond Celiac.
  5. Create a personalized profile that stores the information about celiac disease that is the most important and useful for you.

Your Role

With the power of your voice, Beyond Celiac is shaping a new model for engaging patients in research. Informed and engaged patients are the gears that will ensure celiac disease research results in the changes we deserve.

Across the healthcare field, patients’ stories are shaping what researchers study and how they study it. Go Beyond Celiac connects patients and caregivers with researchers to make sure your needs are heard.

What happens to patients in the real world must be understood. The complete patient experience, not only what is shared in a brief clinic visit, should be part of the research process from the start. Only you can provide a view of what it’s really like to live with celiac disease and what is needed to make your life easier and better.

By participating, you have an opportunity to:

  • Improve your own disease management
  • Share your experiences and learn from the experiences of others
  • Directly contribute to research
  • Keep up-to-date about important developments in diagnosis, disease management, drug development and more

Our Research Goals

Beyond Celiac is committed to paving a new future for you and your family. To create this new future, we will:

Listen

  • We will increase our understanding of what patients and families want and need by collecting stories and related data from 20,000 people with celiac disease.

Learn

  • Based on what we learn from you, we will continue to educate members of the celiac disease community on how to successfully manage the disease.

Educate

  • We seek to increase the diagnosis rate from 17% to 25% through continued education about the serious nature and consequences of celiac disease.

Activate

  • We aim to register and train 10,000 people with celiac disease to become active participants in research through Go Beyond Celiac.

Collaborate

  • We will advance development of potential treatments and cures through research collaborations that unite patients and families with researchers and biotechnology and pharmaceutical companies.
  • We will work with both doctors and researchers from diagnostics companies who can help to improve the diagnosis rates and experiences.

Advocate

  • We will work tirelessly to support approval of new therapies, improvements in clinical practices, reimbursement of patients’ medical expenses and treatments, and patients’ acceptance of new treatment options.

Our Research Network

Beyond Celiac created two unique online research tools to help change the field of celiac disease.

Go Beyond Celiac offers two ways to participate in this movement:

  1. Join Go Beyond Celiac.
    • Your role is simple: Talk about your life before, during and after diagnosis and connect with other patients and families in the process.
  2. Members of Go Beyond Celiac will become eligible to join a celiac disease registry, the Go Beyond Celiac Registry.
    • The Go Beyond Celiac Registry requires more in depth information about you, your medical history and symptoms. This information will help Beyond Celiac identify people who meet the specific requirements of individual research studies.
    • We will contact participants who are identified as potential candidates for a research study or clinical trial based on the information you pr
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