A newly launched database of people living with Type 1 diabetes (T1D) has given researchers high hopes for developing new ways of treating and living with the disease.
The project is called T1D Exchange Registry and it’s the creation of a concern called T1D Exchange. T1D Exchange is a nonprofit organization begun in 2009 as an initiative to improve care for people with T1D and to accelerate the development of diabetes therapies through research and innovation. A major part of the group’s mission is to collect data from actual T1D patients in order to better understand their needs.
The T1D Exchange Registry is the key strategy for optimizing that collection of data. Diabetes patients who participate will complete a brief survey once a year. The registry is entirely online, which, the organization says, will enable “individuals, living throughout the U.S., including underrepresented populations, to share their personal experiences and data.” According to Wendy Wolf, PhD, director of the T1D Exchange Registry, the subsequent analysis will be “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.” As the registry progresses, the plan is to give users the chance to take part in additional research opportunities.
T1D patients who are interested in enrolling are invited to visit the website at https://registry.t1dplatform.org/landing. They will be asked to create an account to determine eligibility, to sign a consent form and to complete a questionnaire. The organization says that it “takes data privacy and security seriously.” According to Dr. Wolf, “T1D Exchange Registry 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.”