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Since 2009, T1D Exchange has been working to improve care and outcomes for people with type 1 diabetes (T1D). We know that fresh ideas, new therapies and improved healthcare processes will have the best possible impact on this community if people living with T1D share their thoughts and experiences about these new developments.
Over the years, T1D Exchange has created a few different initiatives for people with T1D to share their experiences. By participating in these initiatives, people with T1D are guiding the creation of research projects, new treatments, and resources for health care professionals to improve the care provided to the T1D community.
In this article, we’re going to break down the details of two specific initiatives: The T1D Exchange Registry and the T1D Exchange Online Community.
These two groups can sometimes be confused with each other because they have some similarities. However, they have some key differences, but we’ll discuss the different features of each, as well as how to tell if you’re a member of either group.
Check out this handy chart to see a quick comparison of the Registry and Online Community, and read on for a deeper dive into each initiative!
T1D Exchange Registry: t1dregistry.org
The Registry is a long-term T1D research study, for which participants volunteer to anonymously provide their de-identified data for research. Participants take a brief, once-a-year questionnaire, and the responses to these questions help researchers learn more about things like disease management and progression, blood glucose management, and the utilization of health services.
One year after joining the Registry, participants can take the Annual Questionnaire. The Annual Questionnaire is what makes the Registry so impactful! It provides insight into how T1D can change year to year, allowing researchers to look at this chronic illness over time.
Once Registry participants have completed the initial questionnaire, they have the opportunity to sign up for other studies on various topics related to T1D. These studies are tailored to the information provided by the participant when they fill out the initial questionnaire. For example, if a study needs people with T1D in a particular geographic area or in a specific age group, we notify Registry participants who meet the inclusion criteria for that study.
Participants can view all online surveys and in-person studies available to them on their T1D Exchange Registry Dashboard.
Participating in the optional studies through the T1D Exchange Registry is fulfilling because it allows participants to contribute to meaningful research, but it’s also helpful for T1D researchers and scientists, who often have difficulty filling their studies simply because people are not aware that these opportunities exist. The Registry helps connect researchers directly to thousands of people with T1D who are excited to contribute to research.
How do I know if I’m in the T1D Exchange Registry?
If you are a Registry participant, you have a username and password for t1dregistry.org. This login information is different 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 the T1D Exchange Registry dashboard, please contact us at email@example.com.
If you’re not already part of the T1D Exchange 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 T1D
- Update your annual questionnaire this time next year
- Check the notifications on your Registry Dashboard for other optional research opportunities!
T1D Exchange Online Community: t1dexchange.org
With over 26,000 members, the Online Community is the place to read articles from experts in the field, learn about recent study results, answer the daily Question of the Day, and learn from other people in the community.
Questions of the Day are individual survey questions that look at one aspect of life with T1D per day, and are not part of an official research study. When you answer the Question of the Day, your responses can influence research, teach people things they never knew about T1D, and help others feel like they’re not alone.
Members of the Online Community also receive emails about research opportunities. Unlike the Registry, these opportunities are not tailored to each individual, and community members may receive emails for surveys in which they are not eligible to participate.
By completing these surveys, members of the T1D Exchange Online Community have shown researchers their experiences, their preferences for future innovations, and their 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 either enter a username and password or create an account.
If you are unsure of your username and password or need any assistance with logging in to the Online Community, please contact us at firstname.lastname@example.org.
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