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Our Initiatives

Our resources at T1D Exchange to design, populate, and facilitate many different types of diabetes-related research includes: The Registry, The Quality Improvement Collaborative (T1DX-QI), The Online Community, and Custom Research.

Here’s a deeper look at each of these pathways to meaningful diabetes research.

T1D Exchange Registry

The Registry consists of over 18,000+ participants with or affected by T1D. The Registry’s long-term goals include ongoing longitudinal data collection and analysis, and introducing ancillary and external study opportunities to specific subgroups within our extensive cohort.

By partnering with the T1D Exchange Registry, we can promote studies to a specific subgroup or to the whole Registry to assist in recruitment. Researchers can submit requests for certain datasets, shared as aggregate and de-identified, as well as the ability for studies to be displayed and completed through our platform.

Learn more about the Registry here, or please contact the Registry team at registry@t1dexchange.org with your name, affiliated organization, and a brief overview of your research proposal or goals.

If you are interested in historical data from the T1D Exchange Registry or would like more information on datasets currently available, please contact datarequest@t1dexchange.org or visit here.

Quality Improvement Collaborative (T1DX-QI)

Clinics in our T1DX-QI network develop and disseminate best practices in T1D care. The T1DX-QI currently brings together 54 clinics across the United States that treat over 85,000 people with type 1 diabetes and 20,000 with type 2 diabetes.

The T1DX-QI has seen significant success in improving patient care across member clinics, including:

  • Increasing CGM prescriptions and use
  • Developing programs to help patients with A1c’s over 9%
  • Increasing access to diabetes technology in certain racial/ethnic groups
  • Improving mental health screen in both adult and pediatric clinics
  • Increasing clinic visit frequency in Medicaid-insured youth
  • Decreasing DKA hospitalizations through a targeted diabetes wellness program
  • Increasing follow-up attendance after DKA hospitalizations

T1D Exchange is actively recruiting new T1DX-QI clinics. Are you a clinician interested in joining our growing network? Learn more about the T1DX-QI here or contact us at qi@t1dexchange.org.

Want to work with us?

Interested in working with us to produce meaningful custom research? Email Debbie Taylor at dtaylor@t1dexchange.org to get started.

The Online Community

With over 50,000 members, the Online Community is the place to read articles from experts in the field, learn about recent study results, answer the daily questions about life with diabetes, and learn from other people in the community.

Questions of the Day (QOTD) are individual survey questions that look at one aspect of life with T1D per day and are not part of an official research study. Responses to QOTD can influence research, teach people things they never knew about T1D, and help others feel like they’re not alone.

Members of the Online Community also receive emails about research opportunities. Unlike the Registry, these opportunities are not tailored to specific types of participants, and community members may receive emails for surveys in which they are not eligible to participate.

By completing these surveys, members of the T1D Exchange Online Community have shown researchers their experiences, their preferences for future innovations, and their feedback on the current tools available to them.

Custom Research

We work with industry, academia, advocacy organizations, and other researchers to design, deploy, analyze, and report on custom research projects to help them meet their goals.

We have in-house experts managing our research! Our diverse team includes experienced research scientists, data scientists, and subject matter experts with advanced degrees, including seven PhDs, five MPHs, and two MDs.  

With our research partners, we carry out a wide variety of T1D research studies, including:

  • Interviews and focus groups
  • Online surveys
  • Virtual studies
  • Quantitative Analysis
  • Qualitative Studies and Analysis
  • Performance Improvement Analysis
  • Implementation Project Analysis

T1D Exchange has examined a range of important topics using our unique combination of patient and provider relationships and associated qualitative and quantitative data.

Recent custom research projects include:

  • By combining surveys with associated CGM data for over 1,000 individuals, including time in range (TIR) analysis, we have assessed perceptions of severe hypoglycemia and the realities of its frequency, severity, and impact.
  • We recently examined unmet needs and barriers to CGM usage in both T1D and T2D to help guide a company looking to bring a new CGM device to market.
  • We have begun exciting work on the topic of screening people at risk for developing T1D, incorporating patient and provider market research to help inform how we might track real-world efforts in screening across the U.S.
  • With some of our T1DX-QI centers, we examined operational barriers and drivers to smart pen use to help inform the manufacturer of opportunities to reduce system friction and improve uptake.