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People living with type 1 diabetes learn, in many ways, to be research scientists and investigators of their own lives. We learn how slices of pizza or a plate of spaghetti affects our blood sugar, and how to mediate those effects with multiple boluses of insulin or a long-lasting dose. We discover precisely how much sugar we need to stay steady during an intense workout session. In doing so, we begin to learn about the meaning and applications of real-world data and evidence. Modern medical and scientific research takes several different approaches to investigation, from randomized, controlled clinical trials to longitudinal, observational studies that examine how people live with various conditions and therapies in the real world.
The T1D Exchange Registry launched last year, and it’s begun to provide a fascinating and vital look into some of the more detailed aspects of life with type 1 diabetes. From your age of diagnosis to frequency of testing, we’ve learned more about how you’re living, working, and caring for diabetes across the country.
The T1D Exchange Registry is a collection of individuals with type 1 diabetes and their supporters who participate in research. Adults with type 1 diabetes or parents of children with type 1 diabetes can join by registering online, providing consent, and completing a short 28-question survey. Participants will then be asked to complete a similar questionnaire once a year. Once registered, participants will also have the ability to take part in more research opportunities in the future.
T1D Exchange is conducting interviews with caregivers of people with type 1 diabetes who are 55 and over in the United States. The interview will be a semi-structured one-to-one phone interview with a diabetes professional to discuss your perspective and experience providing care for adult patients with type 1 diabetes.
To help get the word out about the Registry and the opportunities it offers to participate in research, members of the Registry team here at T1D Exchange traveled to a range of type 1 diabetes events, walks, and other gatherings.
You can sign an e-birthday card to the scientist who brought insulin therapy into the medical world, and you can help try and break a Guinness World Record for greeting card signatures, thanks to this fun campaign by our friends at Beyond Type 1.