Burden of neurodegenerative diseases: Huntington's disease SNOMED

Coding system: SNOMED CT (UK Clinical Edition)
Coding system release: 42.4.0
Organisation: University of Bristol
Codelist ID: bristol/burden-of-neurodegenerative-diseases-dementia-due-to-huntingtons-snomed
Version ID: 283aa4e9
Number of codes included: 9

Versions

Description

Prevalent cases of neurodegenerative disease with an established diagnosis.

Methodology

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. Shrimp browser and OpenCodeCounts were consulted for hierarchies and additional terms.

Inclusion/exclusion criteria

Clinical codes indicative of an established diagnosis were included. Codes indicative of genetic testing or family history were excluded.

Borderline cases

Huntington's disease inveriably results in dementia. Hence all cases of HD were included; not just those indicative of progression to dementia.

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.

References

Github

Signed off by

Arina Tamborska, (Sept. 28, 2026)

Codelists are developed by a broad community of users for individual study purposes, which may or may not meet the needs of other studies. They should not be thought of as universal definitions of a particular condition.

We don't offer any guarantees about what they do or don't identify. Users should carefully check that any codelist meets their needs, and seek clinical input where appropriate.

code	term
155006000	Huntington's disease
192176001	[X]Dementia in Huntington's disease
230299004	Juvenile onset Huntington's disease
230300007	Late onset Huntington's disease
230301006	Akinetic-rigid form of Huntington's disease
414361000000104	[X]Dementia in Huntington's disease
442344002	Dementia due to Huntington chorea
58756001	Huntington's chorea
82361000119107	Altered behavior in dementia due to Huntington chorea

This page shows the search terms that were used to build the codelist. Concepts that match the search terms, but which were excluded, are in faint grey.

Huntington

Included 9 out of 24 matching concepts.

Show matching concepts

Akinetic-rigid form of Huntington's disease (230301006)
Altered behavior in dementia due to Huntington chorea (82361000119107)
Chorea co-occurrent and due to Huntington disease-like condition (724764007)
Chorea due to Huntington disease-like 1 (1259694006)
Chorea due to Huntington disease-like 2 (1259689006)
Chorea due to Huntington disease-like 3 (1259685000)
Dementia due to Huntington chorea (442344002)
FH: Huntington's chorea (137735009)
Family history: Huntington's chorea (160336000)
Huntington disease gene mutation carrier detection test (437742006)
Huntington disease-like 1 (784371009)
Huntington disease-like 2 (721228006)
Huntington disease-like 3 (770939009)
Huntington disease-like syndrome (702376003)
Huntington disease-like syndrome due to chromosome 9 open reading frame 72 expansions (782743001)
Huntington's chorea (58756001)
Huntington's disease (155006000)
Juvenile onset Huntington's disease (230299004)
Late onset Huntington's disease (230300007)
Spinocerebellar ataxia type 17 (719249005)
[V]Family history of other neurological disease (400351000000107)
[V]Family history of other neurological disease (315820005)
[X]Dementia in Huntington's disease (414361000000104)
[X]Dementia in Huntington's disease (192176001)

code: 442344002

Included 2 out of 2 matching concepts.