BOSTON –T1D Exchange today announced the official launch of the T1D Exchange Registry, an online longitudinal database of people living with type 1 diabetes. 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.
Type 1 diabetes affects approximately 1.25 million people in the U.S., with an estimated 40,000 new people diagnosed annually. Life with type 1 diabetes requires constant blood sugar monitoring and careful attention to avoid the acute dangers caused by hypoglycemia, hypergylcemia and other dangerous conditions..
Supported by The Leona M. and Harry B. Helmsely Charitable Trust, the T1D Exchange Registry aims to create the largest online cohort of individuals living with type 1 diabetes in the U.S. Participants will take part in a brief, annual survey, enabling researchers to learn more about type 1 diabetes 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.
“Longitudinal analysis is critical to drive meaningful type 1 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 Wendy Wolf, PhD, 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 type 1 diabetes research and improve outcomes and quality of life.”
The Registry will be open to anyone living with type 1 diabetes or caring for children with the condition in the U.S., and we encourage our Glu membership to join us in this project.
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.
About T1D Exchange
T1D Exchange is a nonprofit, research organization dedicated to accelerating therapies and improving care for people affected by type 1 diabetes. T1D Exchange actively supports discovery and innovation through its biobank, patient data and biennial Diabetes Innovation Challenge. At the same time, the organization understands that evidence gathered in the “real world” can help bridge the gap between discovery in research settings and impact in people’s lives.
T1D Exchange model uses cutting-edge tools, research methods, and a robust IT platform to gather evidence from the real-world and clinical experiences of people living with type 1 diabetes. The goal is to connect biological samples, medical data, and patient insights to all stages of research and development, expediting the development of therapies and better care for everyone affected by type 1 diabetes.