Helmsley Trust Funds Diabetes Information Exchange Project

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The Leona M. and Harry B. Helmsley Charitable Trust has awarded a $26 million grant to Jaeb Center for the creation of a Type 1 diabetes information exchange. Jaeb Center, based in Tampa, is a freestanding non-profit coordinating center for multi-center clinical trials and epidemiology research projects primarily involving eye disorders or diabetes.

Much of the Jaeb Center's ongoing clinical trial and research work is conducted using web-based tools, said Dr. Roy Beck, executive director of the Jaeb Center. The new Type 1 diabetes information exchange will serve and involve patients, clinicians and researchers, and will include a data repository, biobank and interactive website that supports mobile users, he said. The Exchange is designed to drive a better understanding of the disease, improve care and accelerate new therapies for type 1 diabetes through the promotion of collaborative research and data sharing.

Type 1 diabetes, also known as juvenile diabetes, develops when the immune system attacks insulin-producing cells of the pancreas. It's estimated the disease affects 1 million to 3 million Americans, and most cases develop in children.

During the first stage of the exchange project, approximately 60 clinical centers in the U.S., including large medical centers, rural and urban community clinics and other providers that care for type 1 diabetics are participating in the program, which involves gathering data from patients and clinicians. That phase is going on now. Patients provide information via iPads at the centers details of their medical histories, including the onset of their disease, treatment and care they've received, complications they've experienced and other data, said Beck.

Patients are also asked to update their information via the web at least once a year. Data will also be provided by the patients' clinicians, who will initially enter the data via the web, although the project also aims to build interfaces and mapping that allow patient data to be transmitted from e-medical records, said Beck. The effort will also involve collecting patient glucose readings and other data via mobile medical devices and smart phones, he said.

During the project's second stage slated for next year, a patient portal will allow Type 1 diabetic patients from across the country -- regardless of whether they receive care at the 60-plus participating centers -- to also register on the exchange, providing data about their disease. The goal for the centers is to sign up about 45,000 patients to participate, and it's hoped that the online portal will also attract an additional 50,000 patients, said Beck.

The thousands of patients participating will be able to utilize the exchange's website and social networking capabilities to learn more about their disease through forums and other information that will be available, said Beck. "We need to provide the patients something for doing this," he said.

The exchange also aims to provide findings and information to clinicians. For researchers, patients registered on the exchange could be asked to participate in research studies based on their information, he said.

In the development of the exchange, the Jaeb Center is using products and services from Health Advances, based in Waltham, Mass., Springboard Inc., based in Cambridge, Mass., and Asynchrony Solutions, Inc., based in St. Louis, Mo.

The Helmsley grant runs for three years. However, after that, "we'll look for other sources of sustainability," Beck said. "Our hope is for the exchange to run for a long time," he said. The goal is to uncover new findings to help the treatment of diabetic patients, as well as lead to discoveries so individuals can avoid the disease's many complications, such as eye disorders, Beck said.

The Helmsley charitable organization, established in 1999, is administered by five trustees chosen by the late real estate billionaire Leona Helmsley, who died in 2006. The trust supports a range of organizations focused on health and medical research.