Burden of neurodegenerative diseases: Frontotemporal dementia SNOMED

Metadata

Coding system
SNOMED CT (UK Clinical Edition)
Coding system release
42.4.0
Organisation
University of Bristol
Codelist ID
bristol/burden-of-neurodegenerative-diseases-frontotemporal-dementia-snomed
Version ID
01b6dae3
Number of codes included
24

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Versions

  1. 01b6dae3 Published
    Created: 01 Sep 2026 at 13:42

About

Description

The SNOMED code lists were created by compiling codes from the Quality and Outcomes Framework lists (e.g. QOF Dementia Cluster) and the NHS Digital Primary Care Domain Refsets. (e.g. for Parkinson's etc).

Methodology

Context

The codelist is for use in a neurodegenerative disease burden study (Bristol/ Edinburgh/ Cambridge) to categorise dementias by subtypes.

Inclusion/exclusion criteria

Codes indicative of frontotemporal dementia.

Borderline cases

NA

Sensitivity vs specificity

The codelist is specific for the diagnosis of frontotemporal dementia.

Additional information

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

References

Signed off by

  • Arina Tamborska, (Sept. 2, 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
1259124000 Amyotrophic lateral sclerosis with frontotemporal dementia
1259673008 Dementia due to neurofilament inclusion body disease
1260328002 Familial multiple system deposition of tau protein
1260352009 Frontotemporal dementia due to TARDBP mutation
1260353004 Frontotemporal dementia due to VCP mutation
1260354005 Frontotemporal dementia due to C9orf72 mutation
1260355006 Frontotemporal dementia due to FUS mutation
13092008 Pick's disease
192174003 [X]Dementia in Pick's disease
21921000119103 Dementia co-occurrent and due to Pick's disease
230270009 Frontotemporal dementia
230271008 Pick's disease with Pick bodies
230272001 Pick's disease with Pick cells and no Pick bodies
230288001 Semantic dementia
278857002 Dementia of frontal lobe type
455381000000102 [X]Dementia in Pick's disease
702393003 Frontotemporal dementia with gene located on 3p11
702426001 GRN-related frontotemporal dementia
702429008 Frontotemporal dementia with parkinsonism-17
703544004 Inclusion body myopathy with early-onset Paget disease and frontotemporal dementia
716281000 Primary progressive non fluent aphasia
716667005 Right temporal atrophy variant frontotemporal dementia
716994006 Behavioral variant of frontotemporal dementia
82351000119105 Altered behavior due to Pick's disease

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.

code: 1259124000

Included 1 out of 1 matching concepts.

Show matching concepts
  • Amyotrophic lateral sclerosis with frontotemporal dementia (1259124000)

code: 1259673008

Included 1 out of 1 matching concepts.

Show matching concepts
  • Dementia due to neurofilament inclusion body disease (1259673008)

code: 1260352009

Included 1 out of 1 matching concepts.

Show matching concepts
  • Frontotemporal dementia due to TARDBP mutation (1260352009)

code: 1260353004

Included 1 out of 1 matching concepts.

Show matching concepts
  • Frontotemporal dementia due to VCP mutation (1260353004)

code: 1260354005

Included 1 out of 1 matching concepts.

Show matching concepts
  • Frontotemporal dementia due to C9orf72 mutation (1260354005)

code: 1260355006

Included 1 out of 1 matching concepts.

Show matching concepts
  • Frontotemporal dementia due to FUS mutation (1260355006)

code: 21921000119103

Included 2 out of 2 matching concepts.

Show matching concepts
  • Altered behavior due to Pick's disease (82351000119105)
  • Dementia co-occurrent and due to Pick's disease (21921000119103)

code: 230288001

Included 1 out of 1 matching concepts.

Show matching concepts
  • Semantic dementia (230288001)

code: 278857002

Included 1 out of 1 matching concepts.

Show matching concepts
  • Dementia of frontal lobe type (278857002)

code: 716281000

Included 1 out of 1 matching concepts.

Show matching concepts
  • Primary progressive non fluent aphasia (716281000)

code: 82351000119105

Included 1 out of 1 matching concepts.

Show matching concepts
  • Altered behavior due to Pick's disease (82351000119105)