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

-Kelsie LaFerriere

In recent years, the scientific community has made great strides in research to improve the lives of people living with type 1 diabetes and other chronic diseases. This success is due, in part, to people who have generously donated their time and health information to research.

Researchers have been able to accomplish groundbreaking work with the help of less than 5 percent of the United States population, as the vast majority has yet to take part in research [1]. Think, then, of what new discoveries would emerge if 5 percent, 15 percent, or even 20 percent of the type 1 diabetes community participated in 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.

The Registry employs features that help to make participation in research more engaging and accessible. For example, a mobile-friendly version of the Registry allows participation from any smartphone or hand-held mobile device.

Additionally, enrolled participants can now see their own personalized dashboard in their Registry account. On this dashboard, participants can view their completed studies, view progress of ongoing studies, and easily join any new studies for which they may be eligible.

These new features are part of the Registry’s continuing effort to tackle perceptions that research can be time-consuming and difficult to join. From one localized platform, participants can learn about, and easily participate in, cutting-edge type 1 diabetes research.

It is important for type 1 diabetes research to reflect a vibrant cross-section of the type 1 diabetes community. The new mobile-friendly feature and easy-to-maneuver participant dashboard are just the first steps the Registry team is taking to help lower the barriers to research participation. Whether on an iPad at home, a desktop computer or laptop, or even a mobile device on the go – the T1D Exchange Registry is bringing the research to you.

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 and Registry@T1DExchange.org.

[1] U.S. Food & Drug Administration (2017, July). Global Participation in Clinical Trials Report 2015 – 2016. Retrieved from https://www.fda.gov/media/106725/download