A state population-based statutory reporting of dementias

Area of Science:

• Public Health
• Health Informatics
• Gerontology

Background:

• Multiple states are establishing or considering dementia registries to track disease prevalence and outcomes.
• The development of state-mandated reporting systems for dementia is a growing public health initiative.
• The first Alzheimer's Disease Registry Workgroup Meeting highlighted the importance of stakeholder input.

Purpose of the Study:

• To examine the role of medical record professionals in the development and implementation of dementia registries.
• To identify challenges and solutions encountered by the New York State Alzheimer's Disease and Other Dementias Registry.
• To underscore the ongoing importance of medical record personnel in registry operations and future planning.

Main Methods:

• Review of legislative discussions and workgroup meeting outcomes regarding dementia registries.
• Analysis of the New York State Alzheimer's Disease and Other Dementias Registry's experiences.
• Qualitative assessment of medical record professional involvement through various communication channels and participation.

Main Results:

• Medical record professionals have significantly influenced reporting decisions for dementia registries.
• The New York State registry, a pioneering population-based statutory registry, has overcome unique challenges with professional input.
• Collaboration with medical record personnel has been instrumental in defining registry problems and solutions.

Conclusions:

• Medical record professionals are essential for the successful establishment and operation of dementia registries.
• Their continued involvement is vital for data accuracy and the conceptualization of future registry needs.
• The New York State model demonstrates the value of integrating professional expertise into registry design and function.