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Case Definitions and Data Sources for NNCSS Parkinson Disease Surveillance: A Systematic Review.

Christine D Esper^1,2,3, Kelly N Hogan^2,3, Purni Abeysekara^2,4

¹Department of Neurology, Emory University School of Medicine, Atlanta, Georgia.

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|June 8, 2026

Summary

Establishing national Parkinson disease surveillance requires careful selection of case definitions and data sources. This review identified optimal methods for accurate PD tracking and understanding neurological conditions.

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Area of Science:

Neurology
Epidemiology
Public Health Surveillance

Background:

The National Neurological Conditions Surveillance System (NNCSS) aims to track neurological conditions in the U.S.
Parkinson disease (PD) surveillance methods are currently limited, necessitating a review of existing evidence.

Purpose of the Study:

To review evidence, evaluate performance, and select optimal data source types and case definitions for national PD surveillance.
To establish a foundation for NNCSS's PD surveillance and future expansion to other neurological conditions.

Main Methods:

A systematic literature search of Medline, Embase, PsycInfo, CINAHL, and Scopus (1980-2023) was conducted.
Articles were screened for eligibility, focusing on case definitions for population-based estimates and suitable data sources.
Study quality was assessed, and case definitions/data sources were evaluated using key public health surveillance attributes.

Main Results:

156 articles (2001-2023) were included, predominantly using administrative/claims data (90%).
163 case definitions varied significantly, categorized by their approach to including/excluding other parkinsonisms (OP).
Claims data performed best on key surveillance attributes; no single definition precisely distinguished PD from OP due to diagnostic and coding limitations.

Conclusions:

No single case definition precisely estimates PD due to early-stage diagnostic uncertainty and ICD coding limitations.
Selected 'PD probable' and 'PD possible' definitions offer a range for estimation, balancing specificity and sensitivity.
This systematic review provides a methodological framework for NNCSS case definition and data source selection for PD and other neurological conditions.