The Type 1 Diabetes Registry: What We Learned

Dr. Fran Cogen Health Pro
  • I wanted to tell you about more highlights from the American Diabetes Association Scientific Sessions. One highlight of the conference, that was actually not particularly good news, was the discussion of the Type 1 Diabetes Registry created by The Leona M. and Harry B. Helmsley Charitable Trust. The philanthropic organization funded the Jaeb Center for Health Research in Tampa, FL, to create and coordinate a comprehensive registry of people with type 1 diabetes. Data were collected from 67 clinics throughout the country and included more than 25,000 participants of all ages (more than 13,000 were children and young adults). Based on information from the Youth Diabetes Interest group and the ADA scientific sessions, research demonstrated the following.

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    1. Most of those with type 1 diabetes do not reach treatment targets as established by the American Diabetes Association and other professional organizations. A1c averaged from 7.5 to 8 percent. However, adults older than 50 had the lowest hb A1c average of all age groups (7.6 percent). More problematic is the fact that hypoglycemia still remains a serious concern (as noted by the Diabetes and Complications Trial). The data noted that there was 14 to 20 percent per year of episodes of severe neuroglycopenia that resulted in seizures, loss of consciousness, or visits to the Emergency Department. In people with type 1 diabetes over age 40, 2 to 30 percent have some diabetes-associated complications. (Keep in mind, though, that significant advances in the management of type 1 diabetes has occurred over the last 20-30 years, almost revolutionizing they way we now care for those with T1DM.)


    1. People with type 1 diabetes tend to be overweight or obese as adults.


    1. Children (primarily adolescents) struggle with reaching target A1c levels. The struggle is notable despite the fact that we have different targets (slightly higher) for children and adolescents. As we know from direct experience, it is extremely difficult for adolescents to achieve these targets for a multitude of reasons: both physiologic and behavioral. The A1c average for children younger than 12 and those 13 to 17 are 8.3 percent and 8.7 percent, respectively.


    1. Demographics do, indeed, play a role in successful diabetes management.


      1. Caucasian patients were more likely to use an insulin pump as compared to minorities even when adjusted to income levels.
      2. African Americans had a higher mean A1c as compared to Caucasians. (However, this information should be interpreted cautiously as it has been demonstrated [Chalew et. al in Diabetes Care] that there are differences in hb A1c levels in various ethnic groups regardless of glycemic control. In another words, people of African American descent with type 1 diabetes may have a higher hb A1c than those of Caucasian descent with the same three month mean glucose levels)


    1. There are several common characteristics that predict good glucose control in both youth and adults:
      1. Lower A1c’s were associated with more frequent blood glucose monitoring (has been demonstrated multiple times in evidence based literature)
      2. Lower A1c’s were also associated with decreased insulin dosages due to less insulin resistance
      3. Lower A1c’s are associated with the application of advanced technology: insulin pump therapy and continuous glucose monitoring
      4. Lower A1c’s in adults are associated with marriage and a higher socioeconomic status
      5. Lower A1c’s in youth are associated with younger age (younger children in which parents actually manage the diabetes and school-aged children who aim to please authorities), Caucasian ethnic group and parents with higher education and income
      6. Lower A1c’s in youth also are associated with private health insurance (enabling the ability to obtain advanced technology)


  • Much of this information is not actually new. However, the data supports much of the anecdotal findings that are demonstrated on a daily basis in families, healthcare facilities and in research. There are some barriers that will not be easily broken; however, our goal is to reduce the disparities that prevent the best possible treatment for all those people with type 1 diabetes.

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    What does that mean?

    Clearly there will need to be a referendum in terms of health insurance. I have no doubt that this will be happening in the near future. I only hope it will be of benefit to our populace with type 1 diabetes. Research leading to the cure of type 1 diabetes will continue to be robust; however, more research will be needed to crack the behavioral barriers that lead to decreased adherence among our youth as well as the development of medical therapies that will decrease weight gain associated with good control, hypoglycemia, and, most importantly, improve quality of life.

Published On: June 29, 2012