The T1D Exchange Registry, an online, mobile-capable longitudinal database of people living with type 1 diabetes, officially launched for enrollment on June 3rd. The early enrollees who provided valuable feedback on the platform design, user-friendliness, and user experience have been essential to this achievement. Collectively, this group of early Registry participants provided almost 10,000 answers to questions about their demographic profile, medical history, and diabetes management. With these responses, we’re better able to build a Registry that can help advance meaningful treatment, care, and policy.
From this early data, we already see some notable early trends and characteristics from the data provided by early Registry participants. For example, previous analyses of the Registry data show that the average age of Registry participants is 36 years old. By contrast, a snapshot of T1D Exchange Glu community statistics show that the average age of members is 43 years old.1
Recently, the T1D Exchange Research team conducted some additional analyses to see what other patterns we can identify from this early group of participants. Specifically, we were interested in learning more about any trends in education levels among those who so far have joined. In addition to education level, we were interested in trends related to type 1 diabetes management and history. We also wanted to know how long participants had been diagnosed with type 1 diabetes and how often participants checked their blood sugar.
Lastly, as the T1D Exchange Registry team works diligently to spread the word about the Registry through awareness campaigns and advertising, and partnerships with type 1 diabetes organizations, we are particularly interested in learning more about how people first learn about the Registry. This information can help us gain insight about additional avenues for participant engagement.
Here are the results from early Registry participants:
We are grateful to all who added their voice to the growing cohort of people living with type 1 diabetes by joining the T1D Exchange Registry. We are especially excited to see how participation may evolve over time, particularly with the new mobile-friendly platform and participant dashboard.
We invite you to join the Registry today! 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 diverse snapshot of the type 1 diabetes population nationally.
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.
Lead photo credit: Frank McKenna
Graphics credit: Ray Burgett