T1D Exchange, a nonprofit, research organization today announced the launch of the T1D Exchange Registry, an online database of people living with Type 1 diabetes.
Type 1 diabetes affects approximately 1.25 million people in the U.S., with an estimated 40,000 new people diagnosed each year.
T1D Exchange aims to create the largest online cohort of individuals living with Type 1 diabetes in the U.S.
This pioneering effort provides a mobile-friendly platform for people throughout the U.S. to participate online and share information about their Type 1 diabetes in order to help researchers develop more targeted and effective approaches to treating and living with the disease.
The effort may also help inform reimbursement and policy decisions.
“Longitudinal analysis is critical in driving meaningful diabetes research and innovation, and this project will provide a significant, publicly accessible way to study longer-term issues, such as the effects of aging and the progression of the disease,” said Dr. Wendy Wolf, director of the T1D Exchange Registry.
“T1D Exchange believes in giving everyone with Type 1 diabetes a voice and the registry enables everyone, regardless of where they live, with the opportunity to drive research and improve outcomes and quality of life,” she added.
How T1D Exchange Works
Participants take part in a brief, once a year survey, enabling researchers to learn more about disease management and progression, acute complications, glycemic control and utilization of health services.
The registry is completely online, enabling individuals living throughout the U.S., including underrepresented populations, to share their personal experiences and data.
In the future, registry participants will also have the option to take part in additional research opportunities such as surveys or uploading health device data.
The T1D Exchange Registry is supported by The Leona M. and Harry B. Helmsely Charitable Trust.
For more information about the T1D Exchange Registry please visit: https://registry.t1dplatform.org/landing
Feature image courtesy: T1D Exchange.
T1D Exchange. T1D Exchange Launches Online Registry to Drive Type 1 Diabetes Research. Business Wire. (2019, June, 3). Retrieved: https://www.businesswire.com/news/home/20190603005151/en