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June marks a milestone of great importance and excitement for T1D Exchange – it’s been exactly one year since the T1D Exchange Registry launched to the public, bringing together a large number of people with type 1 diabetes from around the country.
Diversity: The differences in age, race, gender, ethnicity, education, and background within a group – is a critical but often-neglected aspect of research and scientific inquiry. We frequently hear about its importance in many aspects of our life, such as schools and the workplace. However, diversity is particularly important when studying diseases and chronic conditions.
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.
The Registry is designed to be patient-centered in its approach as part of its mission to be a truly inclusive, representative, and transparent research effort that has the potential to advance care for people with type 1 diabetes.
This pioneering effort provides a mobile-friendly platform for people throughout the U.S. to participate online and share information about their type 1 diabetes in order to help researchers develop more targeted and effective approaches to treating and living with the disease.