Diabetes A1c registry is launched in New York City

Washington -- New York City has launched a massive effort to collect and compile the hemoglobin A1c scores of all the men, women and children with diabetes in the five boroughs -- an estimated 530,000 people. Another 265,000 New Yorkers are thought to have it but have yet to be diagnosed.

The registry is intended to provide information that can be used to devise ways to help patients and their physicians better control blood sugar levels. It will gather A1c scores from patients with all diabetes types.

"It's an enormous undertaking," said Diana Berger, MD, medical director of the city's Diabetes Prevention and Control Program. The resulting database could be the largest chronic disease registry in the country, she said.

The project also will harness traditional public health tools to the task of lowering the rate of diabetes in the city. "Chronic disease accounts for about two-thirds of the disease burden, but public health tools are really underutilized for chronic disease prevention and tracking," she said.

The time is definitely right to wage all-out war on diabetes, many physicians note. The Centers for Disease Control and Prevention recently estimated that 20.8 million Americans, or 7% of the U.S. population, has diabetes, up from 18.2 million in 2003. Since 1987, the death rate due to diabetes increased by 45%, while death rates due to heart disease, stroke and cancer declined.

New York City has been hit particularly hard. The South Bronx, for example, has one of the highest prevalence rates in the nation. Some 48,000 people, or 18% of the population, are thought to have the disease.

About half of the 120 labs that already send information electronically to the city health department were to begin reporting A1c scores when a new law took effect Jan. 15, Dr. Berger said. Other labs will be required to join in when they acquire the proper technology. The project does not involve physician reporting.

The registry is not without its critics. Concerns have been raised that patient privacy might be breached. While acknowledging the potential usefulness of a large A1c database, the American Diabetes Assn. declined to fully endorse the project until patient privacy is ensured to the group's satisfaction.

For its part, the health department points to a 100-year history of securing confidential data. "We feel very confident that there will be no breach of privacy," Dr. Berger said.

Plus, there are precedents for disease registries, she noted. There already are registries for cancer and Alzheimer's disease as well as a Veterans Affairs Diabetes Registry.

The diabetes problem is likely to get even more severe unless effective interventions are designed and employed, Dr. Berger said. High obesity rates among very young New York City children already have been noted. "These kids are going to be developing diabetes and heart disease and will die very young," she said. "It breaks my heart."

Once the data are collected, many are determined not to allow the information to gather dust. A pilot intervention project is already being designed. It would be launched in the South Bronx and involve about 270 physicians and other clinicians.

The pilot program is expected to include the notification of physicians when their patients' A1c levels exceed 8%. (Seven percent is good, and some endocrinologists strive for 6.5%.) Information will be sent to the patients as well.

Physicians and patients who do not wish to participate will be allowed to opt out.

Elizabeth Walker, DNSc, RN, who directs a diabetes prevention and control program at Albert Einstein College of Medicine in the Bronx, says she is applying for funds to expand the project beyond "a registry of names."

Dr. Walker suggests such interventions as telephone, print or e-mail counseling of people with poorly controlled blood sugar levels. A health educator, for example, could build a relationship with a patient over the phone to help the patient adhere to medications and to a good diet and exercise program, she said.

A health educator even could scout out the stores in the patient's neighborhood looking for reasonably priced fresh fruits and vegetables.

Filling an information gap

Several physicians applauded the new registry. "I am totally in favor of getting more information," said Zachary Bloomgarden, MD, a private practitioner and associate clinical professor of medicine/endocrinology at Mount Sinai School of Medicine in New York.

"By collecting information, we will alter the behavior of physicians," he predicted. "If doctors understand that [the health department] would like to know the hemoglobin A1c level, it might encourage them to get A1c levels checked quarterly on diabetic patients."

The registry is a very good beginning, said Joel Zonszein, MD, professor of clinical medicine at Albert Einstein College of Medicine. Good demographic information could be helpful, he said. The registry might disclose some pockets of people with high A1c levels who are not being reached by the medical community.

But there are a multitude of complex reasons why people find it difficult to control their blood glucose levels, Dr. Zonszein noted. "They may be depressed or have significant social issues that take priority over taking medications."

David M. Nathan, MD, professor of medicine at Harvard Medical School and director of the diabetes center at Massachusetts General Hospital, also favored the collection of A1c data, although he expressed concern that diabetes could be stigmatized by a possible association with other reportable diseases that may be communicable.

"However, if you want to address this public health nightmare of diabetes, you need to be able to address how people are doing," he said. "One of the things that clinical research has indicated over the years is that hemoglobin A1c assay is a very good indicator of the future health of people with diabetes, because it is so tightly bound to long-term outcomes regarding diabetic complications."