June 10th, 2014

Major Medical Organizations Establish Ambitious Diabetes Registry

Our knowledge of diabetes today is a bit like the way blind men understand an elephant. With a myriad of isolated perspectives it’s nearly impossible to gain a broad overview. Now, a new initiative from a group of major medical organization will seek to provide the tools to better see a full picture of the elephantine problem of diabetes.

The American College of Cardiology, the American Diabetes Association, the American College of Physicians, and the Joslin Diabetes Center announced today that they will launch the Diabetes Collaborative Registry, which they say is “aimed at tracking and improving the quality of diabetes and cardiometabolic care across the primary and specialty care continuum.”

Diabetes patients today “receive treatments across medical specialties for a multitude of related conditions,” according to the announcement. “The Diabetes Collaborative Registry will allow for a longitudinal study of diabetes presentation, progression, management and outcomes, even as patients receive treatment from multidisciplinary care teams.”

The Diabetes Collaborative Registry will utilize technology from the ACC’s PINNACLE Registry, which can bring together electronic medical records created by primary care physicians, endocrinologists, cardiologists, and other health care providers. But the new registry will go beyond PINNACLE and incorporate a broader range of data “to include additional measures relevant to a wider group of providers who are involved in the coordinated care and treatment of diabetes.”

On a practical level, the registry will enable “practices, providers and patients… to track adherence to performance measures at the provider and practice level, compare performance to national benchmarks, target quality improvement areas and ultimately transform the quality of care provided to patients.” Researchers will also now be able to utilize data from different outpatient providers.

“Cardiovascular disease is the leading cause of death among people with diabetes, and there is a clear need for cross-specialty management of diabetes patients,” said the ACC President Patrick O’Gara, in the announcement. “By consolidating patient data, this registry will allow primary care physicians and specialists who treat patients with diabetes to compare data and access real-time metrics on patients in all stages of the disease.”

“Diabetes is not one disease but a complex set of diseases and too often leads to serious and potentially life-threatening complications, such as cardiovascular and kidney disease, as well as nerve damage, amputation, blindness and a multitude of other health problems,” said the ADA’s Chief Scientific and Medical Officer Robert Ratner. “We hope that a cross-specialty, clinical registry will ultimately allow us to improve the quality of care — and therefore quality of life — for all people living with diabetes by giving researchers a clearer picture of what’s happening to patients at various stages of their disease. Improved data collection should help us improve patient outcomes.”

The founding sponsor of the registry is AstraZeneca. The registry expects to announce additional partners in the coming months and is open to accepting additional sponsors.


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