In New York, the name Leona Helmsley often evokes snarky jokes about Trouble, the pooch who inherited $12 million in 2007, when the hotel heiress known as the Queen of Mean died. So it might be a surprise to many New Yorkers to learn that Helmsley and her husband, Harry, set up a charitable trust in 1999—a fund that in the last 10 years has devoted more than $85 million to research into Type 1 diabetes. One of the newest projects to emerge from the Helmsleys’ largesse is T1D Exchange, a Boston-based clinical registry that’s designed to unite diabetes researchers and patients.
This fall, T1D Exchange will launch its most visible platform yet, a social media site for patients called Glu. The site will serve as a sort of Facebook for the diabetes community—a place where patients can go to interact with each other, as well as with the researchers who are trying to learn more about the disease so they can find better treatments. (See preview video below.) “The idea was conceptualized by the Helmsley Trust two years ago based on a gap a lot of people saw on the research side,” says Janak Joshi, executive director of T1D exchange. “The idea is to link patients with the research community, both academic and non-academic.”
T1D exchange is being funded by a three-year, $26 million grant from the New York-based Helmsley Charitable Trust. It launched in September 2010 as a patient registry, where participants could voluntarily self-report or upload data from their blood-glucose monitors. In June, T1D announced that 12,000 patients had enrolled in the registry, and that it had assembled its first set of data from the information those patients provided. The data showed that more frequent glucose testing correlated with lower HbA1c—a key measure of blood-glucose control.
T1D Exchange is also developing a biobanking service, which will collect samples from patient volunteers that researchers can use to study Type 1 diabetes.
True to its name, the social portal Glu is designed to bring all the stakeholders in the fight against diabetes together, Joshi says. The site will be completely voluntary—patients can reveal as much or as little as they like, he says. But the idea is to foster
