T1D Exchange: Helping Patients and Researchers Collaborate Toward a Cure

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Type 1 diabetes is a significant global problem, with 35 million people affected worldwide.  In the United States, there are 2 million T1D patients, accounting for $14 billion in healthcare costs and lost income. Despite decades of research, there are still significant gaps in our understanding of this disease, due to a lack of collaboration.

T1D Exchange is a comprehensive data platform and ecosystem where patients, physicians, researchers, and industry can share information and ideas.

  • Glu– an online community of over 9,500 type 1 Diabetes patients and caretakers who empower one another while contributing to research. Participants educate themselves and offer their input on potential new treatments and devices.
  • Integrated Clinic Network-By connecting over 70 adult and pediatric clinics, T1D Exchange gives researchers access to a base of over 100,000 patients, simplifying the process of clinical trial recruitment and helping accelerate the rate of new discoveries.
  • Clinic Registry-T1D Exchange has compiled a registry of 26,000 patients—diverse in age, ethnicity, and socio-economic background—who submit extensive information upfront and agree to provide annual updates. This represents a wealth of data for researchers to conduct analysis on the full spectrum of patients.
  • Biobank-The centralized repository houses thousands of samples—serum, plasma, white blood cells, DNA, and RNA—and is currently being used for the first large-scale longitudinal study of residual insulin production in patients of various age and disease duration.

T1D Exchange has created an easy-to-use, patient-centered platform that enables the information from all of these sources to come together seamlessly.  The platform supports real-time research, data collection, clinical trial recruitment, and patient insights.  As evidence of this model’s efficacy, the Exchange’s platform has given rise to 11 publications and over 40 abstracts in the space of 3 years.  It has also given patients an unprecedented voice, allowing them not only to find support but also to influence the direction of innovation.

“The type 1 community is very motivated because they feel they have been neglected,” said Gayathri Srinivasan, Associate Director of Strategic Alliances at T1D Exchange. “We decided to create T1D Exchange because we saw what was out there and we felt that nobody was creating an in-depth exchange, centered around empowering patients and making the most out of data.”

Thinking bigger: Unitio

T1D Exchange is the first program of the nonprofit Unitio, which plans to replicate the success of T1D Exchange and apply the model of collaboration and data-sharing among patients and researchers to other diseases.

I would like to see Unitio turn its attention to the needs of the Crohn’s and Psoriatic Arthritis communities.

Which autoimmune disease do you think should be tackled next?How-Much-Code-Do-You-Need-to-Collaborate-These-Days.jpg

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