By Frank D. Roylance , Sun reporter|August 05, 2008
A state auditor's finding that a private contractor tampered with the numbers in the Family Health Administration's cancer registry has cast a new spotlight on the disease registries used to identify and address emerging threats to public health.
Experts in the field say the patient data in the nation's various cancer registries are vital to their efforts to track trends and focus research and public education.
But they also complain that there are no comparable national registries for a long list of public health problems of growing concern in the United States.
"If a Baltimore City health officer wants to know how we're doing for birth defects and birth outcomes, it's hard to get an answer," said Thomas A. Burke, an epidemiologist and professor in the Johns Hopkins University's Bloomberg School of Public Health.
"The same goes for many things that are very important, such as Alzheimer's, autism and multiple sclerosis," he said. "Asthma and heart disease are things we are just beginning to get a handle on."
Cancer registries contain information on the age, race, gender, county of residence, type of cancer, treatment and outcome for as many patients as possible who have been diagnosed with the disease. The goal is to capture data for all of them - from hospitals, cancer centers, diagnostic labs, nursing homes and private practitioners.
"The original purpose of the cancer data was to track cancer incidence and look for reasons why cancer rates might be higher or lower in different parts of the country," said Dr. Elizabeth Ward, director of surveillance research for the American Cancer Society.
"Now they're used more broadly. Many researchers are using the data to look at variations in cancer treatment in different population groups, for example, and to understand the reasons for those differences," she said. "The system really has enabled us to learn quite a bit about the causes and trends of cancer."
The Surveillance Epidemiology and End Results (SEER) registry was established in 1973 by the National Cancer Institute for selected parts of the country. In the 1990s, the Centers for Disease Control and Prevention established the first national registry, called the National Program of Cancer Registries.
Each state maintains a cancer registry, guided by uniform standards established by the North American Association of Central Cancer Registries (NAACCR). Most state registries are managed by state health departments or academic institutions. Fewer are maintained, like Maryland's, by private contractors, according to NAACCR President Susan Gershman.
