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A common goal of state dementia registries is public health disease surveillance for program planning service delivery, and research. Despite this similarity in perspective, methodologic differences involving coverage, diagnostic, and data coding issues distinguish the various registries. Some of these differences include the illnesses, geographic area(s), and population groups covered by dementia registries. Diagnostic differences center on the development and application of case definitions specific to the different types of dementing illness, the thoroughness of accessible sources of medical data, and the standardization of disease staging for the dementias. Competing coding systems for diagnoses exist, but fortunately the coding of procedures is already uniform.

A critical step toward facilitating the production of regional or national aggregate statistics and engaging in multisite research studies would be the achievement of enhanced standardization of the data elements and coding systems of public health and other dementia registries. This article promotes such methodologic compatibility.

26:T405,

Validity can be measured by the amount of bias in registry data which consists of anything that changes the ability to correctly measure the risk of disease in the population. Three issues are explored which may effect the validity of the data: selection of patients; information or measurement errors; and confounding.

New York State has practiced various measures to control for and prevent bias in the data collected for the Alzheimer's Disease and Other Dementias Registry. In addition to preventing bias through registry design and quality control, possible sources of confounding are identified which may be controlled during statistical analysis.

Besides preventing and controlling bias, it is necessary to continuously measure and evaluate the validity of the data which has already been collected. An important outcome of this examination is the conclusion that an evaluation of diagnostic practices and validity of diagnoses reported to the registry must not be conducted.

27:T572,