Chronic Disease Teaching Tools - Disease Registries

What is a Disease Registry?

A disease registry is a special database that contains information about people diagnosed with a specific type of disease. Most disease registries are either hospital based or population based. A hospital-based registry contains data on all the patients with a specific type of disease diagnosed and treated at that hospital. A population-based registry contains records for people diagnosed with a specific type of disease who reside within a defined geographic region.

For example, a hospital can have a breast cancer registry with records for all the women in their breast cancer treatment program. The hospital-based registry would not include all the women with breast cancer in the community, since some women may go elsewhere for treatment. A population-based registry, on the other hand, would contain data on all the women with breast cancer who live in a certain area, regardless of where they receive their treatment. People who live outside the geographic area covered by the population-based registry would not be counted, even if they receive medical care at a facility within the area. Population based registries must collect data from many sources in order to make sure that all cases in the community are accounted for.

What Kinds of Disease Registries Are There?

The New York State Department of Health maintains several population based disease registries for both chronic and communicable disease. The registries related to chronic disease include the Cancer Registry, the Alzheimer’s and Other Dementias Registry and the Congenital Malformations Registry. The Cancer Registry and the Alzheimer’s and Other Dementias Registry are both maintained within the Division of Chronic Disease Prevention and Adult Health. More information about these registries is contained in separate documents.

Are There Other Types of Registries?

There are several other types of registries in addition to disease registries. Procedure registries contain information about all persons undergoing a specific medical procedure, such as mammography or coronary artery bypass graft surgery. There are also exposure registries, which contain information about individuals at high risk of disease due to exposure to hazardous substances in the workplace or environment. Registries of families whose members have higher prevalence of inherited diseases are also a form of exposure registry.