Articles > T1D Exchange Registry

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.

Research on type 1 diabetes often centers on its health impacts, but people with type 1 diabetes have long said that such research only paints half of the picture, and that there are many more hidden costs to life with the condition.

Woman showing another woman data on her smartphone about health and exercise.

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.

T1D Exchange Registry - A User-Friendly Way to Participate in Type 1 Diabetes Research

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.

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.

Kevin is the father of a child diagnosed with type 1 diabetes two and a half years ago. He spoke to us about how important research is to him and his family, creating new opportunities for his child - and others - to live a healthy, happy life.

At the T1D Exchange annual meeting, Wendy Wolf, PhD, discusses the successful launch of T1D Exchange Registry.

-Kelsie LaFerriere The T1D Exchange Registry (hereon referred to as the Registry) is a research study designed to harness the power of people with type 1 diabetes. By completing a questionnaire once a year and opportunities to join other type 1 diabetes research, participants can add their voices, experiences, and data to a body of […]

What is the Difference Between Interventional Studies and Observational Studies?

T1D Exchange Registry Research Study Coordinator Enoma Okunbor provides an overview of the two, as well as more details about how to participate in the T1D Exchange Registry.