Best Practices for a State Alzheimer's Disease Registry: Lessons from Georgia
In May 2014, the Georgia General Assembly enacted legislation establishing the Alzheimer’s Disease Registry (“Registry”) in order to generate new data for research and policy planning. The Task Force bill followed similar federal legislation. This state action has not only drawn tremendous attention to the continued prevalence of Alzheimer’s disease among the population of Georgia but also raised a series of questions regarding the practicability, legality, and effectiveness of the Registry. The lessons learned in Georgia, as Registry implementation moves forward, will provide guidance for other states interested in collecting similar data. In Part I of this article we describe the legislative history and operation of the Registry. In Part II we compare the two other population-based Alzheimer’s disease registries in the United States. In Part III we identify legal and ethical problems that may arise as the Registry becomes fully operational. In Part IV we identify specific concerns regarding the data collection and other procedural rules of the Registry. Finally in Part V, we articulate best practices for the Registry, considering both the unique circumstances of Georgia as well as generalizable concerns for other states.