A state population-based statutory reporting of dementias

Abstract

Dementia registries have been legislated or are under discussion in at least seven states (California, Florida, Maryland, Michigan, South Carolina, Illinois, and Virginia). Future reporting requirements and recommendations for state mandated reporting systems were discussed in February 1988 at the first Alzheimer's Disease Registry Workgroup Meeting, sponsored by the University of South Carolina; Centers for Disease Control; and Alzheimer's Disease and Related Disorders Association (ADRDA). The discussion clearly demonstrated the involvement of medical record professionals in influencing future reporting decisions. As the first state population-based statutory dementia registry, the New York State Alzheimer's Disease and Other Dementias Registry has faced unique problems and developed unique solutions. Both the problems and solutions have been defined with the help of medical record professionals from a variety of reporting institutions. This input occurred through phone calls, correspondence, participation in field trials and through professional organizations. Medical record personnel will continue to play a vital role in both supplying data to the New York State registry and in conceptualizing the needs of future registries in other states.