Registries that collect data from people affected by a chronic condition or disease have long been clinic-based. At the T1D Exchange annual meeting in Cambridge in September, Wendy Wolf, PhD, shared an overview of a different kind of registry that collects data without clinics being the center of the equation.
Wolf is the vice president of the T1D Exchange Registry, a mobile-friendly registry which collects information directly from people living with type 1 diabetes. She began her presentation by differentiating this long-term research effort from the successful and completed T1D Exchange Clinic Registry, a network of 81 clinics which enrolled over 35,000 participants. Data from the previous registry has fueled studies that led to changes in insurance coverage for test strips, continuous glucose monitor (CGM) label expansion, and Medicare coverage for CGMs.
Recent studies have shown that outcomes for people living with type 1 diabetes have not improved as much as clinicians have hoped, however. That has pointed to the need to dive deeper to understand the experience of people with type 1 diabetes and gather information from a wider swath of the patient population, Wolf said.
“These are people that are living with the disease day to day,” she said. “We think that our new model for recruitment…will allow us to reach further both geographically and demographically than was previously possible.”
Wolf and her team created a user-friendly, mobile-accessible online platform for people living with type 1 diabetes to be part of the T1D Exchange Registry. Those who register fill out an initial questionnaire, and then over time are sent surveys and research opportunities. By making the Registry more patient-centered, Wolf hopes to glean data that hasn’t been uncovered from previous research efforts.
“We want to reach out to people who have been historically underrepresented in this research,” Wolf said. “We also want to improve awareness of and facilitate enrollment into other research studies , and to also gather longitudinal data on disease, health status, and outcomes, including patient-reported outcomes.”
At the time of the annual meeting, there were 3,400 participants enrolled in the new Registry since its initial launch in June 2019. The vast majority of those participants are accessing the platform via a mobile device.
The first phase of the launch of the Registry has been successful, and now the Registry team will focus on ways to enrich its value as a research tool. Recruitment has now ramped up to include both event-based recruitment, like at JDRF walks and diabetes-specific conferences, and a digital ad campaign. In addition, the T1D Exchange Registry team will work to recruit patient populations that have often been underrepresented in past type 1 diabetes research, connect with research partners to examine how to utilize the Registry for future research, and explore ways to align this data with other medical data, including electronic medical records.
“We…want to establish the T1D Exchange Registry as the preeminent longitudinal data source in the U.S. (for people with type 1 diabetes),” Wolf said in closing.
Lead photo caption: Wendy Wolf, Vice President of the T1D Exchange Registry.
To see this presentation and others at the T1D Exchange annual meeting, click here.