Table 2. Studies reporting the sensitivity of an MND code in routinely collected datasets, separated by dataset evaluated.

First author	Country	Study period	Study population used to generate reference standard	Study size (n)	Routine dataset	Coding system	Code(s) assessed	Coding position assessed	Disease investigated	Sensitivity summary	Notable study characteristics
Chancellor 19937	UK	1989–1990	MND cases as listed on the Scottish Motor Neurone Disease Register (SMNDR)	317	H	ICD-9	335	Any	MND	Proportion of MND cases with ICD-9 discharge code 335.2
Chió 20028	Italy	1995–1996	ALS cases as listed on The Piemonte and Valle d’Aosta Register for ALS (PARALS))	213	H	ICD-9	335.2	Any	ALS	Proportion of ALS cases with ICD-9 discharge code 335.2	Analysis limited to incident cases
Chancellor 19937	UK	1989–1990	Deceased Scottish Motor Neurone Disease Register (SMNDR) cases.	95	D	ICD-9	335	Any	MND	Proportion of death certificates of known MND cases that report MND
Chió 199217	Italy	1970–1985	Deceased ALS cases ascertained from multiple overlapping sources (hospital archives, neurophysiology laboratories, social security records and files of neurologists)	488	D	Unclear	Unclear	Primary	ALS	Proportion of death certificates of known ALS cases that report ALS
Yeo 201016	Republic of Ireland	2002–2006	Deceased cases registered with the Irish Register for ALS/MND	398	D	ICD-9	Unclear	Any	ALS/MND	Proportion of death certificates of known ALS/MND cases that report ALS/MND

Study population: Source of cases including method of case ascertainment. Study size: Number of known MND cases for which a code was sought. Routine dataset: The routinely collected source of coded datasets; H: hospital admissions data, D: death certification. MND codes: ICD-9 & ICD-9-CM: 335.2 = MND, 335.20 = amyotrophic lateral sclerosis, 335.21 = progressive muscular atrophy, 335.22 = progressive bulbar palsy, 335.23 = pseudobulbar palsy, 335.24 = primary lateral sclerosis, 335.29 = other motor neurone disease. ICD-10: G12.2 = MND, G12.20 = unspecified, G12.21 = amyotrophic lateral sclerosis, G12.22 = progressive bulbar palsy, G12.29 = other motor neurone disease. Coding position: Position at which a code for MND was assessed in the major analysis in the study.