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Thinking about signing up for the T1D Exchange Registry, or already registered but not sure what is next? We sat down with Julia Ravelson, Senior Research Study Coordinator at T1D Exchange and expert on all things related to the Registry to have her walk us through the steps of joining the Registry!
Hello there! My name is Julia and I work on the T1D Exchange Registry Team. I will be your Registry guide throughout this article. I will explain what it means to join the T1D Exchange Registry and how each small step of signing up for the Registry affects the research study. But don’t worry, there are only a few steps, and it only takes 15 minutes to start contributing to T1D research.
Before we walk through the process of signing up, let me give you a quick summary of the T1D Exchange Registry’s mission. Through the data we collect in the Registry, our researchers understand more about real-world type 1 diabetes (T1D) management, the use of health services and diabetes devices, and other illnesses that impact people with T1D, all of which helps us to spur research initiatives aimed to help people with T1D.
Sounds great! How do I start signing up?
Julia: Signing up for the T1D Exchange Registry is a quick process! To sign up, you must live in the United States, and you must either be an adult over age 18 living with T1D, or be a parent or caregiver of a person with T1D under the age of 18.
First, click this link.
Once you provide your name and email address, and create a unique password, you can access a personalized dashboard of T1D research opportunities. If you are signing up on behalf of your child living with T1D, there may be a few additional questions. You can access your Registry account on smart phones, iPads or tablets, and your desktop device.
I created a T1D Exchange Registry account. Am I officially in the T1D research study now?
Julia: Not yet! My team and I are so happy you created an account, but you are not yet a part of the research study or contributing to T1D research. We understand your time is valuable, so we want to confirm you are eligible for the research study.
After clicking on the button to start the Core Study, you will answer five short screening questions to determine your eligibility. If you are deemed ineligible, nothing more is necessary from you, and we thank every individual who expresses interest in the T1D Exchange Registry. In the future, if anything with our eligibility changes, we’ll reach out to you.
I am eligible for the research study! That was quick. What is next?
Julia: Next, we want every participant to understand the ins and outs of the research study by reading and signing the consent form. Consenting is an essential step in the research process. Through the consent form, you will read what you can expect while participating in the study, how we handle sensitive data, the benefits and risks of participating, and answer any other concerns you may have. We also explain how we de-identify data, so your personal data is never shared or made public. Once you have signed the consent form, you are officially a part of the T1D Exchange Registry research study – Congratulations! But the best part is the next step! Let’s keep going!
That’s great, I don’t have any other questions after reading the consent form and I am ready to participate. On to the questionnaire.
Julia: Now, this is the exciting part! Your first Registry questionnaire is called the “Core Study”, which collects essential demographic, general health, diabetes management, glucose monitoring, reported outcomes, and glucagon-specific information.
The data you provide in this questionnaire is essential to understanding the needs and experiences of people living with T1D, their families, and health care providers so we can identify gaps in what we know about diabetes. It should only take 15-20 minutes for you to complete, or you can save your completed work and continue it later.
I just completed that first questionnaire and even was awarded a badge on my dashboard!
Julia: That’s amazing! You’re officially participating in T1D research! You are helping the T1D community and contributing to work that will have a positive impact on people with T1D. You have just added your voice to a growing data set used to drive research initiatives that aim to help people with T1D.
This questionnaire also helps us find additional T1D research opportunities, clinical trials, or surveys that you may be eligible to join. For example, if we have a research opportunity specific to your age group, gender, parental status, or even device type, we will be sure you are notified of this opportunity. Many of these research opportunities even offer participants compensation. We try our best to avoid notifying participants about opportunities in which they would be ineligible to participate.
We will send you an email when a new research opportunity is available on your dashboard, so you never miss the opportunity to participate in T1D research. You can read more about the research opportunity on your dashboard and decide whether you would like to participate or not. We want to make participating in T1D research as easy and streamlined as possible.
That is exciting! Is there anything else I need to know about?
Julia: YES! And this is what makes the T1D Exchange Registry so impactful and may be the most important point of our Q&A. Our research study is a longitudinal study, which means we follow participants over time. The Annual Questionnaire will become available on your dashboard one year after completing your first questionnaire and every year you are part of the study. This allows us to understand the progression of T1D and how management needs change year to year. Participants will receive an electronic gift card from the T1D Exchange Team for their completion of each annual questionnaire 😊.
Just like additional research opportunities, we will send you an email when it is time to log back into the Registry. We encourage participants to update their email addresses through their dashboards to continue receiving study reminders.
What are the key takeaways I can tell my friends and family with T1D who are thinking about signing up?
- Signing up for the Registry is easy and quick.
- You are only part of the research study once you are deemed eligible, sign consent, and complete your first questionnaire.
- And lastly, don’t forget to check your email for additional research opportunities, and always come back to complete your annual questionnaire!
Thank you for this information, Julia! I look forward to participating in more type 1 diabetes research through the T1D Exchange Registry and completing my annual questionnaire next year!