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driving faster, better research to improve type 1 outcomes

Springing Forward to improve outcomes in type 1 diabetes

In New England, we recently moved our clocks forward to signal the beginning of Daylight Savings. Somehow, it feels like time itself has sped up.

I co-founded T1D Exchange six years ago and each year it feels like time is moving faster than ever. When I look at the programs we have implemented and are currently working on to improve outcomes, I know we are using every moment we have to make a difference in type 1 diabetes (T1D).

Just this month, we:

  • announced a groundbreaking healthcare policy initiative with JDRF and the Helmsley Charitable Trust—an unprecedented opportunity to leverage the reach, expertise, and impact of each organization to improve outcomes in type 1 diabetes.
  • held our Investigator and Coordinator conference – a meeting that brings our army of 230 clinicians/researchers who go to battle every day for solutions to important challenges in type 1 diabetes.
  • reached over 16,000 participants in our online T1D community Glu — people living with or caring for someone with type 1 diabetes (T1D) who are actively connecting, providing support and participating in research.

What’s next? Stay tuned because we’re expecting a really exciting Spring:

  • My colleagues Dr. Henry Anhalt and Gary Hall, Jr. are joining me at the Vatican for a conference where we will be raising awareness for the challenges of type 1 diabetes in front of a global audience of cell therapy scientists, physicians, patients, leaders of faith, government and philanthropy.
  • We are preparing over 10 posters and presentations for ADA Scientific Sessions in June (the world’s largest diabetes meeting). including a significant presentation from our study “Racial Differences in Mean CGM Glucose in Relation to HbA1c.” We can’t wait to share results with you in June.

At T1D Exchange, we’re making great progress every day. But we couldn’t do it without you. Whether you participate on Glu, the Clinic Registry or the Living Biobank, you have helped give type 1 diabetes not only a voice; but also an audience. Our community is being heard by people researching T1D and companies developing new treatments and devices. They are all leaning in, listening and learning from you.

Dana A. Ball

Executive Director, T1D Exchange
CEO, Unitio

T1D Exchange Investigator and Coordinator Conference

T1D Exchange recently brought our clinical community of more than 230 instigators and coordinators together to collaborate, develop new study ideas and work on current and upcoming T1D Exchange research projects and studies.

Our communications director and mom of son with T1D highlights 3 studies that provide helpful insights to help with glycemic control.

Learn More

T1D Exchange Science Spotlight: Yuval Dor

The T1D Exchange Biobank is an important resource developed to advance the understanding of T1D. We spotlight one researcher, Yuval Dor, who is putting biosamples to work.

"Our research is opening up exciting opportunities for early detection of T1D and monitoring of disease progression and response to therapy"

Explore findings, current research & areas of interest for Yuval Dor and his team.

Why Do Some People With T1D Stop Using A Pump And CGM?

T1D Exchange researched factors associated with discontinuation of pump and CGM

T1D Exchange Investigator: Viral Shah Assistant Professor of Medicine and Pediatrics Barbara Davis Center for Diabetes University of Colorado

Data shows that the use of an insulin pump and/or continuous glucose monitors (CGM) improve glycemic control. Yet, only a small percentage of people with type 1 diabetes (T1D) are using—and benefitting from—these technologies.

T1D Exchange researchers analyzed factors associated with device discontinuation from 2,452 adults with T1D who have been enrolled in the T1D Exchange clinic registry for a year or longer and:

  • median age was 33 years
  • median T1D duration 18 years;
  • and 61% are female, 91% are non-Hispanic white.

What we learned

Rate of discontinuation of CGM was higher than pump discontinuation in adults with T1D.


For those who discontinued pump within a year

54 of the 1,608 people using pump (3%) discontinued use within 1 year.

Participants who discontinued pump were more likely to be:

  • younger than 50,
  • had lower educational and economical status,
  • have an HbA1c over 9.0%
  • self-monitor their blood sugar less than 4 times per day (p=0.004),

Most Common Reasons for Pump Discontinuation

Problems with insertion/adhesive

Using a pump was too expensive/not covered by insurance

The pump interfered with sports activities

The pump was uncomfortable to wear

Disliked wearing the pump

The pump interfered with intimacy

Problems with the pump working properly

Problems with high blood sugars when using the pump











For those who discontinued CGM within a year

273 of 1,006 people using CGM (27%) discontinued use within 1 year.

Lower income was associated with higher rate of CGM discontinuation. A1c was higher among those who discontinued CGM.

Most Common Reasons for CGM Discontinuation

Problems with the CGM working properly/not accurate enough

Problems with the sensor insertion/adhesive

Using a CGM was too expensive/not covered by insurance

The CGM sensor was uncomfortable to wear

Using a pump and did not want two sites on body

The CGM was too big








Why it matters

Our data shows that the use of an insulin pump and/or continuous glucose monitor (CGM) improves glycemic control—and that leads to better T1D outcomes. T1D Exchange is committed to addressing barriers to pumps and CGM adoption. [ Read about a health policy initiative we launched with JDRF and The Helmsley Charitable Trust to address this topic.]

It’s important to understand the real world reasons why some people with type 1 diabetes discontinue using these devices. Data from this study can be used to help companies making pumps or CGMs to incorporate human factors into design to hopefully boost device acceptance…and long-term use.

Millions of Stories, One Community

DiabeteSpeaks is a podcast series featuring interviews with people of various ages and perspectives of living life with type 1 diabetes.

Tune in today and follow DiabeteSpeaks on social media.


Learn More

Q1 2016

Accelerate Research:

Participate in Glu

As part of our online community of over 16,000 people touched by T1D, you can answer Question of the Day, participate in real-time research, share experiences and learn from others. Go >>