T1D Exchange Registry: Together, We Can Drive Type 1 Diabetes Research

Kelsie LaFerriere

Good data fuels good research, and T1D Exchange has launched a powerful tool to provide meaningful data to help researchers improve the lives of people with type 1 diabetes.

The T1D Exchange Registry launched in December 2018 with the goal of harnessing real-world data from the type 1 diabetes community for research. In the three months since the Registry opened, together participants have already answered nearly 5,000 questions about blood sugar management, medical history, and health changes. These answers can help advance the discovery and development of new treatments for type 1 diabetes, and potentially inform future policy and insurance decisions.

“It’s been really exciting to see the diversity of experiences from participants who have joined in the early days,” says Wendy Wolf, PhD, director of the T1D Exchange Registry. “Even geographically, we already have participants from 40 states in the U.S. and 1 territory.”

Here are some other early trends from Registry participants thus far:

Where participants live:

How old are participants:

How were participants diagnosed:  

Participants’ preferred method of insulin:

There’s still time to join!

Adults with type 1 diabetes or parents/guardians of children with type 1 diabetes can participate by registering online with the T1D Exchange Registry, providing consent, and completing a 28-question survey. Participants will then complete a similar questionnaire once a year. Using quick and accessible online surveys, the Registry hopes to develop a more accurate and broader snapshot of the type 1 diabetes population nationally.

There has never been a significant, long-standing, and publicly accessible data set in the United States specifically for type 1 diabetes– but the T1D Exchange Registry can change that. Now every member of the type 1 diabetes community can make a difference through research, just by adding experiences and data to the T1D Exchange Registry. In the future, participants will also be offered opportunities to take part in additional studies related to type 1 diabetes through this Registry. The next phase of the Registry launch will also include a mobile-friendly solution and a new participant dashboard.

“We know participants are giving us their time and their data, and we want to make it as easy as possible,” Dr. Wolf says. “Now with the Registry, people living with type 1 diabetes can participate in research from anywhere. Together, we can drive type 1 diabetes research.”

Be heard. Support the type 1 diabetes community. Help drive research that matters. For more information, or to join, visit the T1D Exchange Registry or contact us at 617-892-6165 or Registry@T1DExchange.org.


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