The T1D Exchange: Gathering Data on Type 1

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Every June thousands of physicians, researchers and educators head off to the annual meeting of the American Diabetes Association to share ideas and hear the latest research on a myriad of topics in diabetes care. This year, attendees were treated to new data coming from the TID Exchange Clinic Registry.

The Exchange was founded by the Leona M. and Harry B. Helmsley Charitable Trust and has funded its partner the Jaeb Centerfor Health Research located in Tampa, Florida through a $26 million, three year grant. It seeks to integrate traditional research methodologies with advances in health information technology and social networking.

Composed of three integrated programs—a clinic-based registry, a BioBank (which is a centralized depository for biological samples which can be used for current and future research) and an on-line patient social community called Glu—the Trust brings together the insight of stakeholders from many diverse branches of the diabetes community.

According to the Helmsley Trust the registry has three main goals:

Address pertinent clinical issues
Conduct exploratory/hypothesis-generating analyses
Categorize participants for future clinical studies

Currently, over 20,000 people with type 1 diabetes are enrolled in 67 urban and rural clinical centers within theUnited States. Participants range in age from infants to the elderly and include an ethnically diverse population.

The information presented by Richard M. Bergenstal, M.D., (Executive Director of the International Diabetes Center and Vice-Chair of the T1D Exchange), and William V. Tamborlane, M.D., (Chief of Pediatric Diabetes and Endocrinology at Yale University and Vice-Chair of the T1D Exchange) was both expected and surprising.

They reported that patients with type 1 are getting heavier in parallel to the general population in the United States. In fact a majority of the adult patients in the registry were either overweight or obese and unable to meet target A1C levels (<7%). It isn’t surprising that people with type 1 are gaining weight as they are subject to the same environmental pressures as everybody else.

The elderly, as a group, who might be expected to have worse control, had A1Cs closer to target levels but this came at the cost of a greater incidence of severe hypoglycemic episodes. And children, especially teenagers are finding it very difficult to maintain acceptable glucose numbers.

Although disillusioning, but not unforeseen, the data also demonstrated the stark disparities’ that continue to exist between Caucasian and minority populations. African Americans had higher A1C levels and lower participation scores when it came to the use of advanced technologies such as insulin pumps.

Overall people with better control were of higher socio-economic class, were married, checked their glucose levels more often, used less insulin and incorporated advanced technological devices such as continuous glucose monitors in their care more frequently.

Thinking about these results, what do you think it is about human nature that makes it difficult for most people to maintain the rigid lifestyle requirements needed in our current cultural environment to meet target guidelines without the help of a closed-loop, self-regulating system?

One Response to The T1D Exchange: Gathering Data on Type 1

  1. Mike Hoskins says:

    Thanks for this recap! Very interesting information, indeed, and it’ll be exciting to watch what more materializes from the registry and all the dot-connecting as MyGlu gets going! Enjoyed hearing also how the Joslin 50-Year Study data was a part of this bigger picture.

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