T1D Exchange is a nonprofit with one goal: to improve the lives of people impacted by diabetes.

 

How do we do this?

We make participating in research easy. We offer two ways for people with type 1 diabetes to participate in research: our registry and online community.

The biggest difference between these two initiatives is that the registry is a formal research study for long-term data collection, while our online community is a space for reading the latest news on treatments and devices, connecting with others impacted by diabetes, and answering our “Question of the Day” series about life with type 1 diabetes.

These two groups can sometimes be confused with each other because they have some similarities — but also some key differences. You can participate in both!

Learn more about the differences between these two programs.

Registry: t1dregistry.org

What it is: A type 1 diabetes research study

Website: t1dregistry.org

Who can participate: Adults with type 1 diabetes or caregivers of children with type 1 diabetes who live in the United States and can read and understand English.

What participants do: Take a questionnaire once per year.

Other benefits: Participate in additional, optional research studies on their personalized research dashboard.

The registry is a long-term research study designed to capture the experiences and challenges of individuals living with type 1 diabetes. Participants take a brief, once-a-year questionnaire, and the responses to these questions help researchers learn about how type 1 diabetes can change over time.

Once participants have completed the initial questionnaire, they can sign up for additional, optional studies on various topics related to diabetes. Participating in the optional studies through the registry allows participants to contribute to meaningful research from the comfort of home. It also benefits the researchers, who often have difficulty filling their studies simply because people are not aware that these opportunities exist.

These studies are usually tailored to the information provided by the participants when they fill out the initial questionnaire. For example, if a study needs people with diabetes in a particular geographic area or who use a specific device, we notify participants who might meet the inclusion criteria for that study.

Although the research opportunities available to registry participants are more personalized, participants might not be selected for all of the studies on their dashboards. Participants can view all online and in-person studies available to them on their registry dashboard.

One key difference between the registry and the online community is that although online community members periodically receive broad invitations to participate in research studies via email, they do not have a dashboard of research opportunities, and the studies sent to them are not tailored to individual characteristics.

 

How do I know if I’m in the registry?

If you are a registry participant, you have a username and password for t1dregistry.org. This login information is separate from the username and password you use if you are a member of the online community.

If you are unsure of your username and password or need any assistance logging in to your registry account, please contact us at registry@t1dexchange.org.

If you are not already in our registry, here’s how you can join:

  • Create an account at t1dregistry.org
  • Read and sign the online informed consent form
  • Take a 15-minute questionnaire about your experience with type 1 diabetes
  • Update your annual questionnaire this time next year
  • Check your registry dashboard for other optional research opportunities!

 

Online Community: t1dexchange.org

What it is: A website with articles and survey questions

Website: t1dexchange.org

Who can participate: Anyone interested in diabetes

What participants do: Answer Questions of the Day, interact with other community members in the comments of those questions, and read diabetes community news

Other benefits: Members receive emails about diabetes research studies.

Our online community is the place to read articles from experts in the diabetes space, learn about recent study results, answer our “Questions of the Day,” and connect with other people in the diabetes community.

Our Questions of the Day are individual survey questions that look at one aspect of life with type 1 diabetes every day. These questions are not part of any official research study, but rather they provide an opportunity for members to share their experiences, teach people in the community things they never knew about diabetes, and help others feel like they’re not alone.

Anyone who has a connection to diabetes is encouraged to join and share their voice through Question of the Day!

Want to learn more about Question of the Day? Take a look behind the scenes with our former Question of the Day writer!

 

Interested in asking a potential question to the online community? Submit your idea here!

Members of our online community also receive emails about surveys and various research opportunities. Unlike the registry, these opportunities are not tailored to each individual, and community members may receive emails for studies in which they are not eligible to participate.

By participating in these research opportunities, members of our online community have taught researchers about their experiences, preferences for future innovations, and feedback on the current tools available to them.

 

How do I know if I’m a member of the online community?

While looking at the top right corner of t1dexchange.org, if you are logged into your online community profile, you will see an icon with the outline of a person or a profile picture that you have uploaded.

If you are not logged into your online community profile, you will see a blue button that says “Join / Login”. You can click that button to enter a username and password or create an account.

If you are unsure of your username or password or need any assistance with logging in to your online community account, please contact us at admin@t1dexchange.org.