Burden of neurodegenerative diseases: Creutzfeldt-Jakob 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-creutzfeldt-jakob-disease-snomed
Version ID: 414a181e
Number of codes included: 20

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 of CJD were included.

Codes relating to prion agent/ test were excluded.

Borderline cases

Codes for related prion diseases, but not formally classified as CJD were excluded. This includes diseases such as Kuru, a broad umbrella term of spongiform encephalopathy, familial diseases and unspecified "acquired prior disease". Fatal familial insomnia is included.

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. 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
1163119007	Creutzfeldt Jakob disease following graft of dura
1177062005	Sporadic fatal insomnia
1259478009	Dementia due to familial Creutzfeldt-Jakob disease
1259503001	Dementia due to iatrogenic Creutzfeldt-Jakob disease
1259522005	Dementia due to variant Creutzfeldt-Jakob disease
1259529001	Dementia due to sporadic Creutzfeldt-Jakob disease
155061007	Creutzfeldt-Jakob disease
192175002	[X]Dementia in Creutzfeldt-Jakob disease
192818008	Cerebral degeneration due to Creutzfeldt-Jakob disease
304603007	Variant Creutzfeldt-Jakob disease
414351000000102	[X]Dementia in Creutzfeldt-Jakob disease
429458009	Dementia due to Creutzfeldt Jakob disease
713060000	Sporadic Creutzfeldt-Jakob disease
715662009	Iatrogenic Jakob-Creutzfeldt disease
715807002	Familial Creutzfeldt-Jakob
792004	Jakob-Creutzfeldt disease
840452004	Classical sporadic Creutzfeldt-Jakob disease
860826006	Creutzfeldt-Jakob Disease caused by human growth hormone
922061000000103	Sporadic Creutzfeldt-Jakob disease
922071000000105	Sporadic Creutzfeldt Jakob 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.

bovine spong

Included 0 out of 2 matching concepts.

Show matching concepts

Bovine spongiform encephalopathy (52869003)
Bovine spongiform encephalopathy agent (68638009)

spongiform

Included 9 out of 35 matching concepts.