FAQ

How do I join Go Beyond Celiac?

How do I join Go Beyond Celiac?

Joining is easy! Click the button below to register. Once you register, you can start creating your online profile. You’ll then be redirected to your own homepage where you can start contributing to research.

 

 

Why should I participate?

Why should I participate?

Participation in Go Beyond Celiac gives you access to information about yourself, your disease, and how your experience compares to others also living with celiac disease. Here, you’ll be able to connect with others who share your experiences. Plus, your participation is providing researchers with the critical information they don’t have right now. This anonymous information can help researchers learn more about how the disease develops, ways to improve diagnosis and information that can lead to new treatment options and even a cure.

Who should participate?

Who should participate?

People who are diagnosed with celiac disease or parents of a child diagnosed with celiac disease should participate.

In the future, Beyond Celiac will welcome other people to join Go Beyond Celiac:

  • Friends and relatives who have a loved one with celiac disease but are not personally diagnosed with celiac disease
  • People experiencing celiac disease symptoms and are considering getting tested
  • People actively navigating the diagnosis process for celiac disease

Our goal is to have more than 20,000 people join Go Beyond Celiac by the end of 2019. Please check back often for updates on when we plan to expand the groups of participants.

How does it work?

How does it work?

You can think of Go Beyond Celiac as a way to connect with others just like you. You’ll also be directly influencing research by answering questions that researchers need answers to in order to better understand celiac disease and develop and test new treatment options.

To join, click the button below. You’ll be guided through the surveys and questions that all community members are being asked. You’ll immediately be having an impact on the field of celiac disease!

All of the health information that you submit to Go Beyond Celiac will have any identifying characteristics removed, so your information will remain private. You will have the option to add your data and answers to data from others participating in the community. All of this anonymous information will be shared with qualified researchers conducting various studies on celiac disease. You can learn more about the strict policies that Beyond Celiac implements to protect your privacy and medical information here.

How often should I participate?

How often should I participate?

As often as you can! We may add new questions occasionally and you can even suggest ones that you’d like to answer. We ask that you update your data at least two times per year so we can be sure we have the most accurate information from you.

What topics will the research surveys ask me about?

What topics will the research surveys ask me about?

Go Beyond Celiac will focus on a variety of topics, such as:

  •  When and how you (or your child) were diagnosed with celiac disease
  •  What your symptoms have been like over the course of your life  
  • How you feel about the gluten-free diet
  • What types of new treatment options you may be interested in
  • Conditions you may have related to celiac disease
  • How celiac disease impacts you financially, socially and emotionally

What do participants do?

What do participants do?

All you have to do to advance celiac disease research is talk about yourself!

You’ll fill out research surveys privately and answer questions about your own experiences surrounding life before, during and after diagnosis. Some questions will be multiple choice, while others will be free-form text. Participation in Go Beyond Celiac is voluntary. If you choose to participate, you’ll first be guided through a series of important questions about how you were diagnosed and the types of symptoms you have experienced. Once you’ve provided your answers you’ll be able to access all other research surveys and resources, including a unique doctor-finder tool.

Beyond Celiac encourages everyone to complete all surveys in Go Beyond Celiac to increase your contribution to research.

In the future, members of this community will be able to connect with each other as well.

Why do we need more research on celiac disease?

Why do we need more research on celiac disease?

Researchers have discovered key information about celiac disease, including which genes put people at high risk, what the true prevalence rate is, how cells behave when the disease develops, and how the disease process works.

But key details are still missing, and this lack of information prevents doctors and scientists from making the advances that will help you live better and longer. You and others like you can provide these details by sharing information about your medical and lifestyle experiences with celiac disease.

Can I connect with other patients or caregivers?

Can I connect with other patients or caregivers?

There are multiple ways to connect with others in this community. First, you’ll be able to see how your information is similar or different to others. Soon, you’ll also be able to participate in forum-style communications with others as well.

 

How do I change my username or password?

How do I change my username or password?

To change your username, you must be logged in, then click here

Type in the new username you would like, then scroll to the bottom of the page and click "Submit."

To reset your password, click here. Type in your new password, then scroll to the bottom of the page and click "Submit."

What if I am locked out of my account?

What if I am locked out of my account?

If you are locked out of your account, you will need to reset your password. To do that, click here.

Is my information private and secure?

Is my information private and secure?

Yes. Beyond Celiac takes your privacy very seriously and we have technology and processes in place to keep your information private and secure. Before any information is shared with researchers, any information that identifies you is removed (like your name and email address, for example). We take every precaution that is standard for protecting health information. You can learn more about this here.

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