Context

The codelist is for use in a neurodegenerative disease burden study (Bristol/ Edinburgh/ Cambridge); and captures prevalent cases with an established diagnosis. The codelists were developed for neurodegenerative diseases of interest: Dementia, Parkinson’s Disease, Parkinson’s-plus syndromes, Motor Neurone Disease. For the diseases of interest, we reviewed established codelists (e.g. QoF for SNOMED terms), and created any required codelists using diagnostic terms as search criteria. ICD-10 browser was consulted for hierarchies and additional terms. For Dementia, we developed codelists for ‘Unspecified Dementia’ and ‘Other Specified Dementia’ which included rarer or less commonly captured causes such as Dementia due to Huntington’s disease.

Inclusion/exclusion criteria

Codes indicative of an established diagnosis.

Borderline cases

MSA and PSP are excluded and separate code lists are created. Secondary parkinsonism is excluded as does not usually represent the typical primary neurodegenerative disorder.

Sensitivity vs specificity

The primary aim was specificity. We included codes representing a clinical diagnosis of the condition of interest, rather than codes based solely on symptoms or clinical features.

Additional information

Proposed by W Whiteley & S Sarepalli. Reviewed and modified by A Tamborska & W Shi.