BOSTON--(BUSINESS WIRE)--T1D Exchange today announced the official launch of the T1D Exchange Registry, an online longitudinal database of people living with type 1 diabetes (T1D). This pioneering effort provides a mobile-friendly platform for people throughout the U.S. to participate online and share information about their T1D 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.
T1D is an autoimmune condition in which an individual’s body is unable to produce insulin. The disease affects approximately 1.25 million people in the U.S., with an estimated 40,000 new people diagnosed each year. Neither preventable nor curable, living with T1D requires constant monitoring of blood sugar levels and unparalleled attention to care in order to avoid the acute dangers caused by hypoglycemia, in which blood sugar drops too low, or the long term implications of hyperglycemia, in which blood sugar rises too high.
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 T1D in the U.S. 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.
“Longitudinal analysis is critical to drive 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 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 research and improve outcomes and quality of life.”
For more information about the T1D Exchange Registry please visit: https://registry.t1dplatform.org/landing
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.