T1D Exchange is excited to announce that T1D Exchange Registry is now open for enrollment!
T1D Exchange Registry is a web-based platform that will survey and engage people with type 1 diabetes. People living with type 1 diabetes, be they adults or children with type 1 diabetes and their legal guardians, can share their experiences and add their data to a growing data set.
At this time, only participants in the United States will be able to take part.
How to Join
To join, sign up for an account and take a quick questionnaire to make sure you qualify. You will read a consent form that will tell you what T1D Exchange will do with your data and how it will keep it safe. Then you will be asked to complete a questionnaire of less than 30 questions that focuses on your demographics and medical history.
Who Can Join
The Registry is open to people who have been diagnosed with type 1 diabetes in the United States. Parents or legal guardians can answer questions on behalf of a child that is younger than 18 years old. You must be able to read and understand English, currently be taking insulin or have had an islet cell or pancreatic transplant.
What Participation Means
Once you are part of T1D Exchange Registry, you will be asked to update your information once a year. Occasionally, you may also be sent additional surveys from T1D Exchange or partner organizations about specific types of insulin pump devices, other health conditions you may have, or diet and exercise habits. You can choose to participate in these additional surveys, but there is no obligation.
Why T1D Exchange Registry is Important
Currently there is no large, significant, and publicly available data set in the United States for type 1 diabetes. T1D Exchange will establish its Registry as a powerful and valuable tool to accelerate discovery and drug development, one that can be used by industry partners, academic partners, and internal research teams.
In the coming year, T1D Exchange Registry team will focus on expanding recruitment to gain a more accurate snapshot of the type 1 diabetes population in the U.S., and reaching a broader and more diverse population of individuals with type 1 diabetes.
There is no end date for T1D Exchange Registry. The goal is to collect good data from as many people as possible for as long as possible.
Be heard. Support the type 1 diabetes community. Help drive research that matters.
You can also contact the Registry team at Registry@T1DExchange.org if you have questions or concerns.
Caitlin Rooke is the Lead Research Study Coordinator for the Registry. Her background is in clinical research and includes a history of working in the hospital setting, the pharmaceutical industry, and non-profit organizations. She is passionate about research registries and the discoveries they can power.