T1D Exchange, a Boston-based nonprofit that promotes Type 1 diabetes research, has announced the launch of an open online patient data registry. By collecting information from children and adults with the condition, the group hopes to build a substantial longitudinal cohort that will drive new treatment development research and influence new policy or reimbursement decisions.
After creating an account and signing a consent form through the registry’s mobile-friendly online page, patients are asked to complete a questionnaire about their health and follow up once per year to provide updates. All of the data collected by T1D Exchange will be encrypted, with individuals assigned a randomly generated identification number in place of their name, according to the nonprofit, and all study results will be free of any identifying data. In addition, the company noted in its announcement that participants may also be asked to contribute to future research programs that would include shared data from patients’ health devices.
WHY IT MATTERS
The registry is open to patients of all ages, genders, races and ethnic groups who live in the US, are diagnosed with Type 1 diabetes and are taking insulin or have had a transplant. By ensuring that the new platform is easy to access regardless of device or demographic, T1D Exchange is hoping that the resulting cohort will provide unique insights into the experiences of underrepresented patient populations.
“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,” Wendy Wolf, director of the T1D Exchange Registry, said in a statement. “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.”
WHAT’S THE TREND
The past few years have seen a steadily increasing number of online patient registries for various diseases and populations. Just a few months ago Microsoft and its partners launched a pilot in Switzerland that used blockchain technology to build a global registry for rare disease patients. Meanwhile, the NIH’s large-scale All of Us Research Program recently celebrated its one-year enrollment anniversary with more than 230,000 US registrants either joining or completing the initiative’s full registration protocol.
