The T1D Exchange Spurs Research
A growing resource connects type 1s with scientists and one another
Ever had an A1C blood test? Then you’ll want to take a look at the graph above.
It’s from the T1D Exchange, an endeavor to kick-start type 1 diabetes research and development. The exchange connects large numbers of patients and their data with researchers and aims to spark ideas for improving diabetes care.
The graph traces the average A1C by age of people with type 1 diabetes who are part of the T1D Exchange Clinic Registry. Perhaps your A1C (a measure of average blood glucose for the previous two to three months) is higher or lower than the average for your age group. What’s significant, however: No age group meets the recommended general target level of below 7 percent. See that peak in A1C levels around age 17? It’s a sign that teens with diabetes have the worst blood sugar control and may need more help. Information such as this can help us tackle better ways to keep people healthy.
A New Approach
The nonprofit T1D Exchange launched in 2010, funded by the Helmsley Charitable Trust Type 1 Diabetes Program, a major private funder of type 1 research. The trust saw the need for resources that would allow the development and testing of new therapies in less time and at lower cost.
“In the past few decades, we have had better devices, better insulin,” says Dana Ball, executive director and cofounder of the T1D Exchange. “We have definitely improved. But there’s nothing to jump up and down about and ring the bell to say, ‘This therapy or solution has relieved the burden of diabetes.’ ”
Reducing that burden means helping people more easily manage blood sugars—“the lows not so low, the highs not so high,” Ball says—avoid complications, and get back the time they spend on diabetes care.
The T1D Exchange hub includes:
- T1D Exchange Clinic Registry, a database that houses information from more than 26,000 patients with type 1 diabetes.
- T1D Exchange Clinic Network, which includes researchers at more than 70 clinics.
- T1D Exchange Biobank, a biological “library” of blood samples. Researchers can check out samples for approved research projects.
- Glu, myglu.org, an online patient community with discussions, articles, and the chance to take part in online research.
Power in Numbers
One way to speed the investigation of new therapies is to quickly find the right participants to study. For the TEENS study, a collaboration with pharmaceutical maker Sanofi, 500 participants from the clinic network were enrolled in less than five months—impressively speedy results.
Access to registry data observed repeatedly over time is invaluable. Researchers can pinpoint, for example, life stages during which diabetes care is even more difficult than usual, such as those tricky teen years, and come up with solutions. “If you look at the details, you can see the disparities of care and clinical outcomes,” Ball says. That helps focus efforts.
A Place to Gather
The online community, Glu, places patients and their families at the center of research. “We believe patients hold the clues to new discoveries and their involvement is critical,” Ball says.
The online community, launched at the end of 2012, is a toddler compared with other longtime online diabetes communities, but it has grown to having nearly 9,000 members. Communications manager Christine Frost says Glu invites more members to regularly participate and, in particular, hopes to attract more males and parents or guardians to reflect the spectrum of people affected by type 1 diabetes.
A simple sign-up (you’ll share your e-mail and some privacy-protected information about your diabetes status) allows access to the online community, where you can consent to participate in surveys and other online research.
By sharing stories, members connect with others who understand the challenges of life with type 1. Anna Floreen, Glu community outreach manager, wrote about wearing an artificial pancreas prototype for a study (she was on the cover of Diabetes Forecast in March 2014), and contributor Kate Boylan has shared the challenges of a pregnancy with type 1. Sometimes features are all for fun: The site encouraged members to vote on a basketball-style bracket during March; instead of college teams, it pitted insulin pumps against each other by popularity.
Wondering how your care stacks up? A search tool on the website lets you view registry information on frequency of DKA (diabetic ketoacidosis), age of diagnosis, and more. For example, kids in the registry who use insulin injections are more likely to have a DKA episode than those using insulin pumps (nearly 14 percent of injection users had at least one DKA episode over 12 months, compared with 7 percent of pump users). These data don’t prove cause and effect but do suggest areas for more research and improved care.
In addition to serving people with diabetes, the exchange spreads knowledge to health care providers by publishing findings, including 45 abstracts and 13 journal articles so far. The research ranges from patient insights to long-range observational and intervention studies at the clinics in the network.
The exchange (since rolled into an umbrella nonprofit called Unitio that plans to extend the hub model to other disease programs) supports itself through memberships, grants, services, and fund-raising. The Helmsley Charitable Trust is still the primary funder; other members include for-profit pharmaceutical companies and organizations such as the American Diabetes Association and JDRF.
It takes courage to live with diabetes. It also takes courage to invite stakeholders to share information and collaborate. “It takes a lot of courage, it takes a lot of patience, to take a bold and fresh perspective on understanding type 1 diabetes,” Ball says. And, he adds, there’s power in philanthropy—pointing to the passion from the Helmsley Charitable Trust—and strength in working together.