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 former method of clinical trial may best be exemplified in Frederick Banting’s Nobel Prize-winning discovery of insulin, experimenting with treatments for children dying of type 1 diabetes in his Canadian clinics and labs. For certain types of medical research, this is an absolute necessity.

The importance of observational research and real-world data that can be distilled into real-world evidence cannot be understated, however. It’s vital in the development of technologies such as continuous glucose monitors, insulin pumps and more.

The T1D Exchange Registry – Creating change through real-world evidence

The T1D Exchange Registry represents just such an effort to build a database of critical health information related to the lives and vital health statistics of our diabetes community.

To better understand the Registry’s mission, it’s helpful to understand and define “real-world data” and “real-world evidence”. Data meeting this definition can include de-identified electronic health records (EHRs) from hospitals, clinics, and health insurance claims, information gathered from personal technology such as mobile phones, and product- or disease-specific registries. Real-world data is data collected in real-world scenarios, not in a fabricated clinical setting, by real people affected with the afflictions being studied.

Real-world evidence, on the other hand, represents the actual findings, knowledge, and conclusions that can fill in knowledge gaps of how a new drug or device is being used in the real world.

Our core goal is giving people with type 1 diabetes and their supporters opportunities to participate in the latest T1D Exchange-sponsored or affiliated research, which may help accelerate the development of care solutions, support new technologies and therapies, and influence the discussions around public policy, population health, and insurance coverage.

Here are a few examples of the application and importance of real-world evidence:

  • Clinicians, researchers, and policymakers can employ data to monitor trends in healthcare and use this data to improve care and outcomes. For example, the T1D Exchange Quality Improvement Collaborative used real-world data to discover that too few people with diabetes were receiving mental health screening, and moved to improve that issue within in its clinic network.
  • Pharmaceutical and medtech firms employ real-world evidence drive product development. For example, the pump-maker Beta Bionics is using real-world experiences to drive their product development of a dual-hormone insulin pump, while Zealand Pharma is working with T1D Exchange to employ real-world data in the development of its Dasiglucagon (a stable liquid form of human glucagon) pump.

We want to generate real-world evidence to directly impact policy, drug development, and, ultimately, the day-to-day lives of people living with type 1 diabetes. We invite you to take part and help drive research that matters.

Want to learn more or join the T1D Exchange Registry? Click here.

You can also contact the Registry team at Registry@T1DExchange.org if you have questions or concerns.