Burden of neurodegenerative diseases: Motor neurone disease 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-motor-neurone-disease-snomed
Version ID
0f2b31b4
Number of codes included
50

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Versions

  1. 0f2b31b4 Published
    Created: 17 Sep 2026 at 08:28

About

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. For MND, this includes the following subtypes: ALS, PBP (progressive bulbar & pseudobulbar palsy), PLS (primary lateral sclerosis), PSA (progressive spinal atrophy). Exclusion of codes indicating assessment scores, family history.

Borderline cases

Familial/ genetic diseases and syndromes related to MND, but not typically classified as MND. Examples include Wester Pactific Motor Neurone Disease or Juvenile primary lateral sclerosis. These were excluded.

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

Signed off by

  • Arina Tamborska, (Sept. 17, 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
103851000119100 Restrictive lung disease due to amyotrophic lateral sclerosis
1197523001 Autosomal dominant amyotrophic lateral sclerosis type 1
1197524007 Autosomal recessive amyotrophic lateral sclerosis type 1
1201863001 Amyotrophic lateral sclerosis type 1
1201947005 Juvenile amyotrophic lateral sclerosis type 2
1201950008 Amyotrophic lateral sclerosis type 3
1201961000 Juvenile amyotrophic lateral sclerosis type 5
1204334005 Amyotrophic lateral sclerosis type 6
1204349002 Amyotrophic lateral sclerosis type 7
1204350002 Amyotrophic lateral sclerosis type 8
1204351003 Amyotrophic lateral sclerosis type 9
1208412003 Amyotrophic lateral sclerosis type 10
1259121008 Amyotrophic lateral sclerosis, parkinsonism, dementia complex of West New Guinea
1259122001 Amyotrophic lateral sclerosis with parkinsonism
1259123006 Amyotrophic lateral sclerosis, parkinsonism, dementia complex of Kii Peninsula
1259124000 Amyotrophic lateral sclerosis with frontotemporal dementia
1259125004 Amyotrophic lateral sclerosis with multiple system atrophy
1259126003 Amyotrophic lateral sclerosis with autonomic dysfunction
1259127007 Amyotrophic lateral sclerosis with cerebellar dysfunction
1259129005 Amyotrophic lateral sclerosis with spinocerebellar ataxia
155014006 (Anterior horn cell disease) or (muscular atrophy)
155015007 Motor neurone disease
192884004 Anterior horn cell disease
192888001 Motor neurone disease
192889009 Motor neurone disease
192890000 Motor neurone disease NOS
192891001 Other anterior horn cell disease
192892008 Anterior horn cell disease NOS
230258005 Amyotrophic lateral sclerosis with dementia
230274000 Frontal lobe degeneration with motor neurone disease
230547002 Bulbar palsy
249892007 Progressive pseudobulbar palsy
267693003 (Anterior horn cell disease) or (muscular atrophy)
37340000 Motor neuron disease
46251005 Corticospinal motor disease
49793008 Hereditary motor neuron disease
54304004 Progressive bulbar palsy
630471000000103 Anterior horn cell disease NOS
646201000000105 Motor neurone disease NOS
718555006 Juvenile amyotrophic lateral sclerosis
722987009 Amyotrophic lateral sclerosis plus syndrome
784341001 Amyotrophic lateral sclerosis type 4
785809005 Mills syndrome
81211007 Primary lateral sclerosis
838276009 Amyotrophic lateral sclerosis, parkinsonism, dementia complex
84590007 Lower motor neuron disease
85672005 Anterior horn cell disease
86044005 Amyotrophic lateral sclerosis
88923002 Progressive muscular atrophy
95647008 Upper motor neuron 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.

amyotrophic lateral sclerosis

Included 26 out of 41 matching concepts.

Show matching concepts
  • Amyotrophic Lateral Sclerosis Functional Rating Scale - Revised (1024961000000104)
  • Amyotrophic Lateral Sclerosis Functional Rating Scale - Revised (1024971000000106)
  • Amyotrophic Lateral Sclerosis Functional Rating Scale - Revised score (1024991000000105)
  • Amyotrophic Lateral Sclerosis Functional Rating Scale Revised (718646004)
  • Amyotrophic Lateral Sclerosis Functional Rating Scale Revised score (718648003)
  • Amyotrophic lateral sclerosis (86044005)
  • Amyotrophic lateral sclerosis drugs Band 1 (221551000000100)
  • Amyotrophic lateral sclerosis drugs band 1 (272971000000109)
  • Amyotrophic lateral sclerosis plus syndrome (722987009)
  • Amyotrophic lateral sclerosis type 1 (1201863001)
  • Amyotrophic lateral sclerosis type 10 (1208412003)
  • Amyotrophic lateral sclerosis type 3 (1201950008)
  • Amyotrophic lateral sclerosis type 4 (784341001)
  • Amyotrophic lateral sclerosis type 6 (1204334005)
  • Amyotrophic lateral sclerosis type 7 (1204349002)
  • Amyotrophic lateral sclerosis type 8 (1204350002)
  • Amyotrophic lateral sclerosis type 9 (1204351003)
  • Amyotrophic lateral sclerosis with autonomic dysfunction (1259126003)
  • Amyotrophic lateral sclerosis with cerebellar dysfunction (1259127007)
  • Amyotrophic lateral sclerosis with dementia (230258005)
  • Amyotrophic lateral sclerosis with frontotemporal dementia (1259124000)
  • Amyotrophic lateral sclerosis with multiple system atrophy (1259125004)
  • Amyotrophic lateral sclerosis with parkinsonism (1259122001)
  • Amyotrophic lateral sclerosis with spinocerebellar ataxia (1259129005)
  • Amyotrophic lateral sclerosis, parkinsonism, dementia complex (838276009)
  • Amyotrophic lateral sclerosis, parkinsonism, dementia complex of Kii Peninsula (1259123006)
  • Amyotrophic lateral sclerosis, parkinsonism, dementia complex of West New Guinea (1259121008)
  • Assessment using Amyotrophic Lateral Sclerosis Functional Rating Scale - Revised (1024981000000108)
  • Assessment using Amyotrophic Lateral Sclerosis Functional Rating Scale Revised (718645000)
  • Assessment using Norris Amyotrophic Lateral Sclerosis Scale (1091321000000102)
  • Autosomal dominant amyotrophic lateral sclerosis type 1 (1197523001)
  • Autosomal recessive amyotrophic lateral sclerosis type 1 (1197524007)
  • Family history of amyotrophic lateral sclerosis (430727006)
  • Inclusion body myopathy with early-onset Paget disease and frontotemporal dementia (703544004)
  • Juvenile amyotrophic lateral sclerosis (718555006)
  • Juvenile amyotrophic lateral sclerosis type 2 (1201947005)
  • Juvenile amyotrophic lateral sclerosis type 5 (1201961000)
  • Norris Amyotrophic Lateral Sclerosis Scale (1092451000000105)
  • Norris Amyotrophic Lateral Sclerosis Scale score (770614002)
  • Norris Amyotrophic Lateral Sclerosis Scale score (1091341000000109)
  • Restrictive lung disease due to amyotrophic lateral sclerosis (103851000119100)

lou gehrig

Included 25 out of 25 matching concepts.

Show matching concepts
  • Amyotrophic lateral sclerosis (86044005)
  • Amyotrophic lateral sclerosis plus syndrome (722987009)
  • Amyotrophic lateral sclerosis type 1 (1201863001)
  • Amyotrophic lateral sclerosis type 10 (1208412003)
  • Amyotrophic lateral sclerosis type 3 (1201950008)
  • Amyotrophic lateral sclerosis type 4 (784341001)
  • Amyotrophic lateral sclerosis type 6 (1204334005)
  • Amyotrophic lateral sclerosis type 7 (1204349002)
  • Amyotrophic lateral sclerosis type 8 (1204350002)
  • Amyotrophic lateral sclerosis type 9 (1204351003)
  • Amyotrophic lateral sclerosis with autonomic dysfunction (1259126003)
  • Amyotrophic lateral sclerosis with cerebellar dysfunction (1259127007)
  • Amyotrophic lateral sclerosis with dementia (230258005)
  • Amyotrophic lateral sclerosis with frontotemporal dementia (1259124000)
  • Amyotrophic lateral sclerosis with multiple system atrophy (1259125004)
  • Amyotrophic lateral sclerosis with parkinsonism (1259122001)
  • Amyotrophic lateral sclerosis with spinocerebellar ataxia (1259129005)
  • Amyotrophic lateral sclerosis, parkinsonism, dementia complex (838276009)
  • Amyotrophic lateral sclerosis, parkinsonism, dementia complex of Kii Peninsula (1259123006)
  • Amyotrophic lateral sclerosis, parkinsonism, dementia complex of West New Guinea (1259121008)
  • Autosomal dominant amyotrophic lateral sclerosis type 1 (1197523001)
  • Autosomal recessive amyotrophic lateral sclerosis type 1 (1197524007)
  • Juvenile amyotrophic lateral sclerosis (718555006)
  • Juvenile amyotrophic lateral sclerosis type 2 (1201947005)
  • Juvenile amyotrophic lateral sclerosis type 5 (1201961000)

motor neurone disease

Included 42 out of 102 matching concepts.

Show matching concepts
  • Adult spinal muscular atrophy (85505000)
  • Amyotrophic lateral sclerosis (86044005)
  • Amyotrophic lateral sclerosis plus syndrome (722987009)
  • Amyotrophic lateral sclerosis type 1 (1201863001)
  • Amyotrophic lateral sclerosis type 10 (1208412003)
  • Amyotrophic lateral sclerosis type 3 (1201950008)
  • Amyotrophic lateral sclerosis type 4 (784341001)
  • Amyotrophic lateral sclerosis type 6 (1204334005)
  • Amyotrophic lateral sclerosis type 7 (1204349002)
  • Amyotrophic lateral sclerosis type 8 (1204350002)
  • Amyotrophic lateral sclerosis type 9 (1204351003)
  • Amyotrophic lateral sclerosis with autonomic dysfunction (1259126003)
  • Amyotrophic lateral sclerosis with cerebellar dysfunction (1259127007)
  • Amyotrophic lateral sclerosis with dementia (230258005)
  • Amyotrophic lateral sclerosis with frontotemporal dementia (1259124000)
  • Amyotrophic lateral sclerosis with multiple system atrophy (1259125004)
  • Amyotrophic lateral sclerosis with parkinsonism (1259122001)
  • Amyotrophic lateral sclerosis with spinocerebellar ataxia (1259129005)
  • Amyotrophic lateral sclerosis, parkinsonism, dementia complex (838276009)
  • Amyotrophic lateral sclerosis, parkinsonism, dementia complex of Kii Peninsula (1259123006)
  • Amyotrophic lateral sclerosis, parkinsonism, dementia complex of West New Guinea (1259121008)
  • Anterior horn cell disease (85672005)
  • Anterior opercular syndrome (864471000000106)
  • Autosomal dominant adult-onset proximal spinal muscular atrophy (784391002)
  • Autosomal dominant amyotrophic lateral sclerosis type 1 (1197523001)
  • Autosomal dominant childhood-onset proximal spinal muscular atrophy (772129007)
  • Autosomal dominant congenital benign spinal muscular atrophy (763067000)
  • Autosomal recessive amyotrophic lateral sclerosis type 1 (1197524007)
  • Autosomal recessive axonal neuropathy with neuromyotonia (711406009)
  • Autosomal recessive lower motor neuron disease with childhood onset (771302009)
  • Bell's palsy (193093009)
  • Bulbar weakness (398432008)
  • Bulbospinal neuronopathy (230253001)
  • Congenital pseudobulbar palsy (230784003)
  • Corticospinal motor disease (46251005)
  • Distal hereditary motor neuropathy type 1 (770630005)
  • Distal hereditary motor neuropathy type 7 (771081007)
  • Distal spinal muscular atrophy (230247001)
  • Drugs used for the treatment of motor neurone disease (323360002)
  • Early-onset progressive encephalopathy, spastic ataxia, distal spinal muscular atrophy syndrome (1172588008)
  • FH: Motor neurone disease (389279003)
  • Facioscapulohumeral spinal muscular atrophy (230249003)
  • Facioscapulohumeral spinal muscular atrophy with sensory loss (230250003)
  • Familial recurrent peripheral facial palsy (783257005)
  • Family history of amyotrophic lateral sclerosis (430727006)
  • Family history: Motor neurone disease (160344000)
  • Frontal lobe degeneration with motor neurone disease (230274000)
  • Hereditary motor neuron disease (49793008)
  • Juvenile amyotrophic lateral sclerosis (718555006)
  • Juvenile amyotrophic lateral sclerosis type 2 (1201947005)
  • Juvenile amyotrophic lateral sclerosis type 5 (1201961000)
  • Juvenile primary lateral sclerosis (717964007)
  • Kugelberg-Welander disease (54280009)
  • Lethal arthrogryposis co-occurrent with anterior horn cell disease (715565004)
  • Lower motor neuron disease (84590007)
  • Lower motor neuron syndrome with late-adult onset (783618006)
  • Madras-type motor neurone disease (230255008)
  • Mills syndrome (785809005)
  • Motor neuron disease (37340000)
  • Motor neuron disease due to and following radiotherapy to spinal cord (1263531001)
  • Motor neuron disease due to gammopathy (1263538007)
  • Motor neuron disease due to hereditary spastic paraplegia (1263536006)
  • Motor neuron disease due to herpes zoster (1263534009)
  • Motor neuron disease due to human immunodeficiency virus infection (1263535005)
  • Motor neuron disease due to lead intoxication (866051002)
  • Motor neuron disease due to neoplastic disease (1263497002)
  • Motor neurone disease (192888001)
  • Motor neurone disease (155015007)
  • Motor neurone disease (192889009)
  • Motor neurone disease NOS (192890000)
  • Motor neurone disease NOS (646201000000105)
  • Neurogenic scapuloperoneal syndrome Kaeser type (1208615009)
  • Neuromyotonia (305719002)
  • O'Sullivan McLeod syndrome (1299151005)
  • Oculopharyngeal spinal muscular atrophy (230252006)
  • Paraneoplastic motor neurone disease (230257000)
  • Post poliomyelitis syndrome (31097004)
  • Prenatal-onset spinal muscular atrophy with congenital bone fractures (1172689007)
  • Primary lateral sclerosis (81211007)
  • Progressive bulbar palsy (54304004)
  • Progressive bulbar palsy of childhood (230246005)
  • Progressive bulbar palsy with sensorineural deafness (699866005)
  • Progressive muscular atrophy (88923002)
  • Progressive pseudobulbar palsy (249892007)
  • Proximal spinal muscular atrophy (1142327006)
  • Pseudobulbar palsy (7379000)
  • Scapulohumeral spinal muscular atrophy (230251004)
  • Scapuloperoneal spinal muscular atrophy (230248006)
  • Segmental spinal muscular atrophy (1142330004)
  • Spastic tetraplegia with rigidity syndrome (44395000)
  • Spinal atrophy, ophthalmoplegia, pyramidal syndrome (771238004)
  • Spinal muscular atrophy (5262007)
  • Spinal muscular atrophy with progressive myoclonic epilepsy (703524005)
  • Spinal muscular atrophy with respiratory distress type 2 (770727008)
  • Spinal muscular atrophy, Dandy-Walker malformation, cataract syndrome (723612001)
  • Spinal muscular atrophy, type II (128212001)
  • Troyer syndrome (230264003)
  • Upper motor neuron disease (95647008)
  • Werdnig-Hoffmann disease (64383006)
  • Western Pacific motor neurone disease (230254007)
  • X-linked distal arthrogryposis multiplex congenita (719836007)
  • X-linked distal spinal muscular atrophy type 3 (766764008)

primary lateral sclerosis

Included 1 out of 2 matching concepts.

Show matching concepts
  • Juvenile primary lateral sclerosis (717964007)
  • Primary lateral sclerosis (81211007)

code: 230274000

Included 1 out of 1 matching concepts.

Show matching concepts
  • Frontal lobe degeneration with motor neurone disease (230274000)