T1D Exchange

T1D Exchange was launched in 2009 to create a comprehensive platform for type 1 diabetes researchers, clinicians and patients that would improve care and accelerate the discovery and development of treatments. Established with funding from the Trust, the Exchange is now a program of Unitio, a new 501(c)(3) created to leverage emerging technology to foster patient engagement and collaboration among research and medical communities in the search of new therapies. Dana Ball, executive director and co-founder of T1D Exchange and CEO of Unitio, discusses the Exchange’s impact on the T1D landscape and beyond.

HCT: WHAT IS T1D EXCHANGE AND WHAT ARE ITS GOALS?

Dana Ball: T1D Exchange is a unique clinical care and research acceleration platform that aims to improve the quality of life for individuals living with type 1 diabetes. Together, this allied platform consists of a clinic research network with over 70 participating clinics; a longitudinal clinic registry hosting records for more than 26,000 T1D patients; a Biorepository that stores and processes biological data for scientific analysis; and an online patient and caregiver community called Glu. Glu was developed to support, empower and educate those affected by the disease and allow people touched by T1D to participate in real-world research projects and programs.

By centralizing thousands of biological samples, the Exchange aims to be a world-class resource for innovative research and a catalyst for exchange of knowledge and collaboration. Designed as a hub for all things T1D, we aim to understand the root cause of the disease and ultimately improve clinical care. To get there, the shared structure of T1D Exchange leverages its patient members, network, biosamples, staff, investigators and other collaborators, reducing the time and finances required to test and develop new solutions for all T1D stakeholders.

HCT: WHY WAS IT IMPORTANT TO DEVELOP THIS KIND OF INITIATIVE?

Dana Ball: In the larger disease community, type 1 diabetes is relatively small – with an estimated population of two million U.S. patients. Even after decades of work, little has been known about the cause of T1D. With scarcely accessible information, we recognized the need for a larger, more contemporary cohort of patients, data, biological samples and real-world patient insight. 

Even still, many researchers have novel ideas but lack resources, resulting in lost time and productivity. T1D Exchange seeks to fill that gap. Our staff of statisticians, epidemiologists and other technical experts works with the data and supports our investigators’ research interests. The power of the data allows us to better understand clinical care, disparities of care, and provides scientific evidence that, in turn, helps determine unmet needs and future research investment opportunities. Our integrated model allows for a faster, more efficient execution of studies and trials.

HCT: WHO PARTICIPATED IN CREATING T1D EXCHANGE?

Dana Ball: At the core of T1D Exchange is collaboration and partnership. The Exchange was co-created with the T1D stakeholder community and was thoughtfully developed with initial buy-in from medical professionals, researchers, funders, regulators and patients.

Our early meetings were attended by over 50 clinical investigators interested in participating in a wider clinic network. These founding clinicians jointly developed our data collection strategy and helped pave the way for the Exchange’s first clinical and scientific studies.

HCT: WHAT IMPACT HAS THE EXCHANGE HAD, AND CAN IT BE APPLIED TO OTHER DISEASE AREAS?

Dana Ball: The Exchange is a proven model to accelerate research and development. Today’s data are now large enough to be clinically relevant and serve as a resource for investigators, clinicians, industry and regulators. Type 1 diabetes is the most severe form of diabetes, though it’s often perceived as an easily managed medical condition. The comprehensive data generated by the Exchange have been able to present a real picture of patients’ needs and reveal that the majority of patients aren't achieving optimal control of their diabetes. And thus far, more than 8,100 people utilize Glu to engage with others and share personal insight to ensure the patient-caregiver voice is present at all phases of development.

From clinical care to discovery and testing of new therapeutics, the T1D Exchange model boosts efficiency at each stage of research and development. This model is now being shared through Unitio, a new nonprofit established to manage the T1D Exchange program and offer the Exchange’s expertise and patient engagement platform to other disease groups. Our goal is to share what we’ve created to develop additional chronic disease research platforms, which we believe will lead to the development of faster therapies and improved patient outcomes.

HCT: DESCRIBE YOUR WORK WITH THE TRUST IN THE DEVELOPMENT OF T1D EXCHANGE.

Dana Ball: At the outset, the Trust traveled extensively and met with all stakeholders to learn how to best address unmet needs and leverage funding with other grantmakers. Following their early role as the primary funder, the Trust’s continued commitment to the sustainability of T1D Exchange has been critical to our ongoing achievements. It’s that demonstrated confidence in the Exchange that helps us to garner new members and foster budding projects. Looking beyond the Exchange, the Trust has emerged as a collaborative driving force in the community, acting as a facilitator of relationships and a true partner for those working in type 1 diabetes.