Online-Only Material

Online-Only Material

Table e-1: Search Strategy

Table e-2: List of excluded articles and reason for exclusion

Table-e-3: Alzheimer’s Disease and Dementia: Summary of sensitivity, specificity, positive predictive value, and negative predictive value reported by validation studies for 8 neurological conditions

Table-e-4: Brain Tumors: Summary of sensitivity, specificity, positive predictive value, and negative predictive value reported by validation studies for 8 neurological conditions

Table-e-5: Epilepsy: Summary of sensitivity, specificity, positive predictive value, and negative predictive value reported by validation studies for 8 neurological conditions

Table-e-6: Motor neuron disease (including amyotrophic lateral sclerosis and other anterior horn cell disease): Summary of sensitivity, specificity, positive predictive value, and negative predictive value reported by validation studies for 8 neurological conditions

Table-e-7: Multiple Sclerosis: Summary of sensitivity, specificity, positive predictive value, and negative predictive value reported by validation studies for 8 neurological conditions

Table-e-8: Parkinson’s Disease and Parkinsonism: Summary of sensitivity, specificity, positive predictive value, and negative predictive value reported by validation studies for 8 neurological conditions

Table-e-9: Spinal Cord Injury: Summary of sensitivity, specificity, positive predictive value, and negative predictive value reported by validation studies for 8 neurological conditions

Table-e-10: Traumatic Brain Injury: Summary of sensitivity, specificity, positive predictive value, and negative predictive value reported by validation studies for 8 neurological conditions

Table e-11: Quality assessment as outlined in Benchimol et al. (2011)

Appendix e-1: ICD-9 and ICD-10 codes used in validation studies

Table e-1: Search Strategy

(exp health services research/ or administrative data.mp. or hospital discharge data.mp. or ICD9.mp. or ICD10.mp. or ICD-9.mp. or ICD-10.mp. or exp international classification of diseases/ or medical record*.mp. or health information.mp. or surveillance.mp. or physician claims.mp. or claims.mp. or hospital discharge.mp. or coding.mp. or codes.mp.) and (validity or validation or case definition or algorithm or agreement or accuracy or sensitivity or specificity or positive predictive value or negative predictive value).mp. AND *CONDITION*

LIMITS= ENGLISH LANGUAGE, HUMANS

Condition / Key Words / Search Date
Alzheimer’s disease and related dementia / exp Alzheimer disease/ OR Alzheimer.mp OR exp dementia/ OR dementia.mp / November 26, 2010
Dystonia / Exp Dystonia / or Dystonia.mp or exp Dystonia Musculorum Deformans/ or exp Dystonic Disorders / or Dystonic Disorders.mp / November 25, 2010
Epilepsy / exp epilepsy/ OR epilepsy.mp / November 26, 2010
Huntington’s disease / Exp Huntington Disease / or Huntington Disease.mp or Huntington’s disease.mp / November 25, 2010
Motor neuron disease (including ALS and other anterior horn cell disease) / Exp Motor Neuron Disease/ or Motor Neuron Disease.mp or exp Amyotrophic Lateral Sclerosis / or Amyotrophic Lateral Sclerosis.mp or ALS.mp / November 25, 2010
Muscular dystrophy / Exp Muscular Dystrophies/ or Muscular Dystrophies.mp or muscular dystrophy.mp or exp Muscular Dystrophy, Duchenne/ or exp Muscular Dystrophies, Limb-Girdle or exp Muscular Dystrophy, Emery-Dreifuss or exp Muscular Dystrophy, Oculopharyngeal / November 25, 2010
Multiple sclerosis / exp multiple sclerosis/ OR multiple sclerosis.mp / November 26, 2010
Parkinson’s disease/ Parkinsonism / Exp Parkinson Disease / or Parkinson Disease.mp or Parkinson’s disease.mp / November 25, 2011
Spinal cord injury / Exp Spinal Cord Injuries or Spinal Cord Injuries.mp or Spinal Cord Injury.mp / November 25, 2010
Tourette Syndrome / exp tourette syndrome/ OR exp tic disorders/ OR tourette syndrome.mp or tic disorder.mp or tic disorders.mp / November 26, 2010 (Medline)
December 13, 2010 (EMBASE)
Traumatic brain injury / exp brain injuries/ OR brain injury.mp OR brain injuries.mp / November 26, 2010 (Medline)
November 29, 2010 (EMBASE)
Hydrocephalus / exp hydrocephalus/ OR exp normotensive hydrocephalus/ OR exp communicating hydrocephalus/ OR congenital hydrocephalus/ OR hydrocephalus.mp / March 3, 2011
Spina Bifida / exp spina bifida/ OR exp spinal dysraphism/ OR exp spina bifida cystic/ OR spina bifida occulta OR spina bifida.mp / March 3, 2011
Cerebral Palsy / exp cerebral palsy/ / March 3, 2011
Brain Tumors / exp brain tumor/ OR exp brain neoplasms/ OR exp meningeal neoplasms/ OR exp brain cancer/ OR exp central nervous system neoplasms OR exp meningioma OR exp malignant meningioma OR brain tumor.mp OR brain tumors.mp OR brain neoplasms.mp OR brain cancer.mp / March 3, 2011

Table e-2: List of excluded articles and reason for exclusion

Condition / Author / Year / Reason for Exclusion
Alzheimer's Disease / Baldereschi 1 / 1994 / No Sn, Sp, PPV, NPV or kappa
Boustani 2 / 2005 / No Sn, Sp, PPV, NPV or kappa
Cole 3 / 2003 / No ICD validation
Erkinjuntti 4 / 1997 / No ICD validation
Francesconi 5 / 2007 / No ICD validation
Henderson 6 / 1994 / No ICD validation
Lillquist 7 / 2004 / No Sn, Sp, PPV, NPV or kappa
Lin 8 / 2010 / No ICD validation, Kappa Only
Maio 9 / 2005 / No ICD validation
McGonigal 10 / 1992 / No since accuracy only, no Sn, SP, etc
Mulligan 11 / 1994 / No ICD validation
Naik 12 / 2008 / Did not validate ICD codes for dementia specifically
Newens 13 / 1993 / No ICD validation
Ostbye 14 / 2008 / No ICD codes mentioned, Kappa only
Phillips 15 / 1997 / Kappa reported in text
Phung 16 / 2007 / No Sn, Sp, PPV, NPV or kappa
Powell 17 / 2001 / No ICD validation
Pressley 18 / 2003 / Kappa Only
Raiford 19 / 1994 / No dementia ICD codes listed
Ryan 20 / 1994 / No Sn, Sp, PPV or NPV
Sorenson 21 / 2001 / No ICD code validation
Taylor 22 / 2002 / No Sn, Sp, PPV, or NPV
Uwakwe 23 / 2000 / No ICD validation
Vilata-Franch 24 / 2006 / No ICD validation and depression not dementia
Wancata 25 / 2007 / No ICD validation
Jin26 / 2004 / ICD-8 included in case definition
Dahl27 / 2007 / ICD-8 included in case definition
Brain Tumor / Castillo 28 / 2004 / Does not validate an ICD case definition, No Sn, Sp, PPV, NPV or Kappa
Davis 29 / 1996 / Does not validate ICD codes
Larsen 30 / 2009 / Does not validate ICD codes
McKinney 31 / 1994 / No Sn, Sp, PPV, NPV or Kappa
Schrag 32 / 2009 / No Sn, Sp, PPV, NPV or Kappa
Cerebral Palsy / Gainsborough 33 / 2008 / Does not validate ICD codes
Johnson 34 / 1999 / No Sn, Sp, PPV, NPV or Kappa
Paneth 35 / 2003 / Does not validate ICD codes
Parkes 36 / 2001 / Does not validate ICD codes
Parkes 37 / 1998 / ICD coded database used as reference standard
Topp 38 / 1997 / Not an ICD case definition - looks at variables of children with CP
Westbom 39 / 2007 / No Sn, Sp, PPV, NPV or Kappa
Dystonia / Louis 40 / 2007 / Essential tremor - not dystonia
Epilepsy / Beach41 / 2005 / No Sn, Sp, PPV, NPV or Kappa and No ICD
Engeland 42 / 2009 / AED's used as proxy for epilepsy but indication for AED was not recorded
Hardie 43 / 2007 / Database included textual data and ICD
Holden 44 / 2005 / Complex modeling - not just ICD
Holden 45 / 2005 / Prevalence study not testing a case definition
Lanska 46 / 1995 / Neonatal Seizures
Lanska 47 / 1996 / Neonatal Seizures
Pugh 48 / 2009 / No validation
Shui 49 / 2009 / Vaccine database - epilepsy vs convulsion unclear
Vestergaard 50 / 2005 / Febrile Seizures
Huntington's Disease / Conneally 51 / 1992 / Not a validation study
Giampietro 52 / 2006 / Not a validation study
Hydrocephalus / Lynberg 53 / 1990 / Specific to babies exposed to accutane
Wang 54 / 2006 / No Sn, Sp, PPV, NPV or Kappa
Motor Neuron Disease / Alonso 55 / 2010 / Letter
Alonso 56 / 2009 / Does not report results of validation
Colman 57 / 2008 / No ICD data
Fong 58 / 2005 / Does not report results of validation
McCarty 59 / 1993 / Review article
Yeo 60 / 2010 / No ICD codes
Multiple Sclerosis / Ball 61 / 2002 / No ICD codes
Mullooly 62 / 2008 / Not original data
Muscular Dystrophy / Giampietro 52 / 2006 / No Sn, Sp, PPV, NPV
Mathews 63 / 2010 / No validation
Miller 64 / 2006 / No ICD validation
Pisa65 / 2009 / Not muscular dystrophy (ALS only)
Parkinson's Disease / Caslakev 66 / 2008 / Not administrative data
Gambassi 67 / 1998 / Does not validate ICD codes (uses ICD codes to validate MDS)
Gribben 68 / 2001 / Not a validation study
Guttman 69 / 2001 / Does not report sensitivity, specificity, etc
Josephs 70 / 2003 / Not administrative data
Louis 40 / 2007 / Not Parkinson’s Disease
Simpson 71 / 2004 / Not administrative data
van de Vijver 72 / 2001 / Does not validate ICD codes
Spina Bifida / Devine 73 / 2008 / Does not validate ICD codes
Duke 74 / 2007 / No ICD codes and very small sample size (n=3)
Giampietro 52 / 2006 / Does not validate ICD codes
Jacques 75 / 2006 / Does not validate ICD codes
Spinal Cord Injury / Augutis 76 / 2003 / No Sn, Sp, PPV, NPV or Kappa
Calhoun 77 / 2009 / No ICD validation
Faciszewski 78 / 1997 / Not Spinal injury directly
Garton 79 / 2008 / No ICD validation - Sn of diagnostic tests instead
Nordgren 80 / 2008 / No validation
O'Connor 81 / 2002 / No validation
Price 82 / 1994 / Could only have reported PPV erroneously reported SN
Rowland 83 / 1998 / No ICD - and modeling
Sniezek 84 / 1996 / Letter - not original data
Surkin 85 / 2000 / Calculated Sn but really mean PPV
TBI / Boake 86 / 2004 / No reference standard, compare two databases
Cuff 87 / 2007 / Does not validate an ICD database
Deb 88 / 1999 / Does not validate an ICD database
Guerrero 89 / 2000 / Does not validate an ICD database
Hill 90 / 2009 / Does not validate an ICD database
Kashluba 91 / 2006 / Does not validate an ICD database
Kim 92 / 2000 / Does not validate an ICD database
Kim 93 / 2009 / Does not validate an ICD database
Labelle 94 / 2002 / Does not validate an ICD database
McNaughton 95 / 2000 / Not an ICD validation
Perel 96 / 2008 / Does not validate an ICD database
Powell 97 / 2008 / No ICD codes
Ryu 98, 99 / 2009 / Does not validate an ICD database
Wirtz 99 / 2008 / Surveillance, No Sn, SP etc
Xiang 100 / 2007 / Reviewers assigned ICD codes
Zygun 101 / 2005 / Does not validate an ICD database

Table-e3 Alzheimer’s Disease and Dementia: Summary of sensitivity, specificity, positive predictive value, and negative predictive value reported by validation studies

Year, Location, Reference / Data Year / Sample Population / Database Validated* / Study Size / ICD Version / Diagnostic Coding Field Position / ICD Codes / Reference Standard / Sn / Sp / PPV / NPV
1992,
USA102 / 1988-1990 / Alzheimer’s or Dementia or Related Disorders / Population-based; Death Certificates / 450 / ICD-9-CM / All / 331.0, 290.0-290.3, 290.8-290.9, 290.4-290.43, 291.2, 292.82, 294.0-294.9, 332.0-332.1, 333.4 / Medical Chart / 23 / - / - / -
1988-1990 / Alzheimer’s or Dementia or Related Disorders / Population-based; Death Certificates / 450 / ICD-9-CM / All / 331.0 / Medical Chart / 28 / 98 / - / -
1988-1990 / Alzheimer’s or Dementia or Related Disorders / Population-based; Death Certificates / 450 / ICD-9-CM / All / 290.0-290.3, 290.8-290.9 / Medical Chart / 15 / 91 / - / -
1988-1990 / Alzheimer’s or Dementia or Related Disorders / Population-based; Death Certificates / 450 / ICD-9-CM / All / 290.4-290.43 / Medical Chart / 8 / 100 / - / -
1988-1990 / Alzheimer’s or Dementia Related Disorders / Population-based; Death Certificates / 450 / ICD-9-CM / All / 291.2, 292.82, 294.0-294.9, 332.0-332.1,333.4 / Medical Chart / 15 / 99 / - / -
1992,
USA103 / 1984-1985 / General / Population-based; Inpatient / 7050 / ICD-9-CM / All / 290-290.9, 331.0-331.2 / Auditor assigned ICD-9 codes to chart / 76 / >94 / 60 / -
1984-1985 / General / Population-based; Inpatient / 7050 / ICD-9-CM / Primary / 290-290.9, 331.0-331.2 / Auditor assigned ICD-9 codes to chart / 53 / >94 / 75 / -
2001,
USA104 / 1996-1997 / Alzheimer’s or Dementia Symptoms / Neurology Clinics; Outpatient / 229 / ICD-9-CM / - / 331.0 / Medical Chart / 36.5 / 99.0 / 97.9 / -
1996-1997 / Alzheimer’s or Dementia Symptoms / Neurology Clinics; Outpatient / 73 / ICD-9-CM / - / 331.0, 290.0, 290.1, 290.2 / Medical Chart / 50 / 90.3 / 86.3 / -
1996-1997 / Alzheimer’s or Dementia Symptoms / Neurology Clinics; Outpatient / 154 / ICD-9-CM / - / 331.0, 290.0, 290.1, 290.2, 298.9 / Medical Chart / 86.5 / 56.3 / 70.8 / -
2002,
Canada105 / 1996-1997 / General / Population-based; Inpatient / 1200 / ICD-9-CM / All / 1 of the following codes: 290.x, 294.1, 331.2 / Medical Chart / 30.0 / 99.8 / 75.0 / 98.8
2006,
Australia106 / 1998-1999 / General / Population-based; Inpatient / 7004 / ICD-10-AM / All / F00, F01, F051 / Auditor assigned ICD-10-AM codes to chart / 53 / -- / 95 / -
2000-2001 / General / Population-based; Inpatient / 7004 / ICD-10-AM / All / F00, F01, F051 / Auditor assigned ICD-10-AM codes to chart / 67 / - / 76 / -
2007,
USA107 / 2002-2004 / Alzheimer’s or Dementia (≥ 40 years old) or Related Disorders / Population-based; Outpatient, Inpatient / 15764 / ICD-9-CM / All / 290.0, 290.1, 290.11, 290.12, 290.13, 290.2, 290.20, 290.21, 290.3, 290.4, 290.40, 290.41, 290.42, 290.43, 291.2, 294.1, 294.10, 294.11, 046.1, 331.0, 331.11, 331.19, 331.2, 331.82 / Dementia diagnosis reported in Minimum Data Set / 69 / 85 / 81 / 74
2002-2004 / Alzheimer’s and Dementia (≥ 40 years old) or Related Disorders / Population-based; Outpatient, Inpatient / 14108 / ICD-9-CM / All / 2 of the following codes: 290.0, 290.1, 290.11, 290.12, 290.13, 290.2, 290.20, 290.21, 290.3, 290.4, 290.40, 290.41, 290.42, 290.43, 291.2, 294.1, 294.10, 294.11, 046.1, 331.0, 331.11, 331.19, 331.2, 331.82 / Dementia diagnosis reported in Minimum Data Set / 63 / 88 / 83 / 72
2002-2004 / Alzheimer’s or Dementia (≥ 60 years old) or Related Disorders / Population-based; Outpatient,
Inpatient / 14869 / ICD-9-CM / All / 290.0, 290.1, 290.11, 290.12, 290.13, 290.2, 290.20, 290.21, 290.3, 290.4, 290.40, 290.41, 290.42, 290.43, 291.2, 294.1, 294.10, 294.11, 046.1, 331.0, 331.11, 331.19, 331.2, 331.82 / Dementia diagnosis reported in Minimum Data Set / 69 / 84 / 83 / 71
2002-2004 / Alzheimer’s or Dementia (≥ 60 years old) or Related Disorders / Population-based; Outpatient,
Inpatient / 14869 / ICD-9-CM / All / 2 of the following codes: 290.0, 290.1, 290.11, 290.12, 290.13, 290.2, 290.20, 290.21, 290.3, 290.4, 290.40, 290.41, 290.42, 290.43, 291.2, 294.1, 294.10, 294.11, 046.1, 331.0, 331.11, 331.19, 331.2, 331.82 / Dementia diagnosis reported in Minimum Data Set / 63 / 87 / 85 / 68
2008,
Canada108 / 2003 / General / Population-based; Inpatient / 4008 / ICD-9-CM / All / 1 of the following codes: 290.x, 294.1, 331.2 / Medical Chart / 32.3 / 100 / 95.6 / 97.7
2003 / General / Population-based; Inpatient / 4008 / ICD-10-CA / All / 1 of the following codes: F00.x, F01.x, F02.x, F03.x, G30.x, F05.1, G31.1 / Medical Chart / 66.9 / 99.8 / 92.7 / 98.9
2009,
USA109 / 2001-2003 / General / Population-based; Outpatient,
Inpatient / 758 / ICD-9-CM / Primary, Secondary / 331.0 / Expert Consensus / 61.5 / 91.1 / 72.0 / 86.4
2001-2003 / General / Population-based; Outpatient,
Inpatient / 758 / ICD-9-CM / Primary, Secondary / 331.0, 331.1, 331.2, 331.7, 290.0, 290.1, 290.10, 290.11, 290.12, 290.13, 290.20, 290.21, 290.3, 290.40, 290.41, 290.42, 290.43, 294.0, 294.1, 294.8, 797 / Expert Consensus / 85.5 / 85.9 / 77.6 / 91.2

*Population-based refers to whether the administrative database being validated is population-based even though the population being sampled may include a subgroup of patients (eg, population based Veterans database, Medicare etc)

ICD= international classification of disease, Sn=sensitivity, Sp=specificity, PPV=positive predictive value, NPV=negative predictive value, CM=clinical modification, AM=Australian modification

Table e-4 Brain Tumor: Summary of sensitivity, specificity, positive predictive value, and negative predictive value reported by validation studies

Year, Location, Reference / Data Year / Sample Population / Database Validated* / Study Size / ICD Version / Diagnostic Coding Field Position / ICD Codes / Reference Standard / Sn / Sp / PPV / NPV
1997,
Scotland110 / 1989-1990 / Intracranial Tumors / Population-based; Outpatient, Inpatient,
Death Certificates / 352 / ICD-9 / Primary / 191, 192.0, 192.1, 192.8, 192.9, 194.3, 194.4, 237, 237.0, 237.1, 237.5, 237.6, 237.9, 239, 239.6, 239.7 / Diagnosis of primary intracranial tumors in incident study / 54 / - / - / -
2009,
USA111 / 2004 / Lung Cancer / Population-based; Outpatient,
Inpatient / 241 / ICD-9-CM / Secondary / ≥1 claim with code 198.3 / CNS metastasis on chart / 100 / 97 / 91 / -
2004 / Lung Cancer / Population-based; Outpatient,
Inpatient / 241 / ICD-9-CM / Secondary / ≥2 claims with code 198.3 / CNS metastasis on chart / 97 / 98 / 93 / -
2004 / Lung Cancer / Population-based; Outpatient,
Inpatient / 241 / ICD-9-CM / Secondary / ≥3 claims with code 198.3 / CNS metastasis on chart / 97 / 99 / 98 / -

ICD= international classification of disease, Sn=sensitivity, Sp=specificity, PPV=positive predictive value, NPV=negative predictive value, CM=clinical modification

Table e-5 Epilepsy: Summary of sensitivity, specificity, positive predictive value, and negative predictive value reported by validation studies

Year, Location, Reference / Data Year / Sample Population / Database Validated* / Study Size / ICD Version / Diagnostic Coding Field Position / ICD Codes / Reference Standard / Sn / Sp / PPV / NPV
2010,
Canada112 / 2005-2007 / Seizure Monitoring Unit / Population-based; Inpatient / 127 / ICD-10-CA / Primary / G40-41 / Medical Chart / 98.8 / 69.6 / 84.9 / 97.1
2000 / Epilepsy or Epilepsy Mimics / Population-based; Inpatient / 209 / ICD-9-CM / Primary / 345.x / Medical Chart / - / - / 97.7 / 99.1
2000 / Epilepsy or Epilepsy Mimics / Population-based; Inpatient / 209 / ICD-9-CM / Primary / 345.x & 780.3 / Medical Chart / - / - / 83.5 / -
2004 / Epilepsy or Epilepsy Mimics / Population-based; Inpatient / 247 / ICD-10-CA / Primary / G40-41 / Medical Chart / - / - / 97.8 / 98.5
2004 / Epilepsy or Epilepsy Mimics / Population-based; Inpatient / 247 / ICD-10-CA / Primary / G40-41 & R56 / Medical Chart / - / - / 78.1 / -
2000 / Epilepsy or Epilepsy Mimics / Population-based; ER Visits / 277 / ICD-9-CM / Primary / 345 / Medical Chart / - / - / 98.9 / 97.0
2000 / Epilepsy or Epilepsy Mimics / Population-based; ER Visits / 277 / ICD-9-CM / Primary / 345.x & 780.3 / Medical Chart / - / - / 83.6 / -
2004 / Epilepsy or Epilepsy Mimics / ER Visits / 207 / ICD-10-CA / Primary / G40-41 / Medical Chart / - / - / 100 / 89.5
2004 / Epilepsy or Epilepsy Mimics / ER Visits / 207 / ICD-10-CA / Primary / G40-41 & R56 / Medical Chart / - / - / 71.6 / -
2007,
Denmark113 / 1994-2002 / Epilepsy / Population-based; Inpatient, Outpatient / 105 / ICD-10 / - / G40-41 / Medical Chart / - / - / 79 / -
2008,
USA114 / 1999-2003 / Epilepsy / Population-based; Inpatient, Outpatient, Pharmacy / 126 / ICD-9-CM / - / 345 or 780.39 and ≥ 1 AED / Electronic Medical Records / - / - / 94 / -
2009,
USA115 / 1998-2002 / Possible Epilepsy or Seizures / Population-based; Inpatient, Outpatient / 1277 / ICD-9-CM / - / 345.x, 780.3 / Medical Chart / - / - / 62 / -
1998-2002 / Possible Epilepsy or Seizure / Population-based; Inpatient, Outpatient / 1277 / ICD-9-CM / - / 345 / Medical Chart / - / - / 90 / -

ICD= international classification of disease, Sn=sensitivity, Sp=specificity, PPV=positive predictive value, NPV=negative predictive value, CA=Canada, CM=clinical modification

Table e-6 Motor Neuron Disease (including amyotrophic lateral sclerosis and other anterior horn cell disease): Summary of sensitivity, specificity, positive predictive value, and negative predictive value reported by validation studies

Year, Location, Reference / Data Year / Sample Population / Database Validated* / Study Size / ICD Version / Diagnostic Coding Field Position / ICD Codes / Reference Standard / Sn / Sp / PPV / NPV
1993,
Scotland116 / 1989-1990 / Motor Neuron Disease / Population-based; Inpatient / 377 / ICD-9 / Primary, Secondary / 335 / Scottish Motor Neuron Disease Register / 84 / - / 70 / -
1989-1990 / Motor Neuron Disease / Population-based; Death Certificates / 377 / ICD-9 / Primary, Secondary / 335 / Scottish Motor Neuron Disease Register / - / - / 90 / -
2001,
Italy117 / 1994-2001 / Possible Motor Neuron Disease / Population-based; Inpatient / 237 / ICD-9 / Primary / 335.2 / Medical Chart / 91.6 / 99.9 / 65.4 / -
2002,
Italy118 / 1995-1996 / Possible Motor Neuron Disease / Population-based; Inpatient / 433 / ICD-9-CM / Primary, Secondary / 335.2 / Population-Based Registry (PARALS) / 78.9 / - / 38.8 / -
2009,
Italy65 / 2005-2006 / Neurological Diseases / Single Hospital; Inpatient / 511 / ICD-9-CM / Primary, Secondary / 335.2 / Medical Chart / 93 / 99 / 87 / 99
2005-2006 / Neurological Diseases / Single Hospital; Inpatient / 511 / ICD-9-CM / Primary, Secondary / 335.2 / Medical Chart Excluding “suspect” ALS / 91 / - / 67 / -

ICD= international classification of disease, Sn=sensitivity, Sp=specificity, PPV=positive predictive value, NPV=negative predictive value, CM=clinical modification, ALS=amyotrophic lateral sclerosis

Table e-7 Multiple Sclerosis: Summary of sensitivity, specificity, positive predictive value, and negative predictive value reported by validation studies

†additional case definitions were tested in this study in an online appendix but only those reported in the paper (i.e. the best case definitions selected by the authors) are reported here

ICD= international classification of disease, Sn=sensitivity, Sp=specificity, PPV=positive predictive value, NPV=negative predictive value, CA=Canada, CM=clinical modification
Table e-8 Parkinson’s Disease and Parkinsonism Summary of sensitivity, specificity, positive predictive value, and negative predictive value reported by validation studies

Year, Location, Reference / Data Year / Sample Population / Database Validated* / Study Size / ICD Version / Diagnostic Coding Field Position / ICD Codes / Reference Standard / Sn / Sp / PPV / NPV
2005,
USA121 / 1998-2002 / Possible Parkinson’s Disease / Population-based; Inpatient, Outpatient / 175 / ICD-9-CM / - / 332.0, 332.1, 333.0 / Medical Chart / 18.7 / 99.9 / 81.0 / -
1998-2002 / Possible Parkinson’s Disease / Population-based; Inpatient, Outpatient, Prescription / 158 / ICD-9-CM / - / 332.0, 332.1, 333.0 or dopamine agonist or levodopa/carbidopa / Medical Chart / 37.9 / 99.7 / 60.4 / -
1998-2002 / Possible Parkinson’s Disease / Population-based; Inpatient, Outpatient, Prescription / - / ICD-9-CM / - / 332.0, 332.1, 333.0, 781.0 or dopamine agonist or levodopa/carbidopa / Medical Chart / 42.5 / 99.3 / 53.3 / -
2007,
USA122 / 1998-2000 / Parkinson’s / Single Hospital; Inpatient, Outpatient / 782 / ICD-9-CM / Primary, Secondary / 332.0, 332.1 / Medical Chart / - / - / 76 / -
1998-2000 / Incident Parkinsonism / Single Hospital; Inpatient, Outpatient / 191 / ICD-9-CM / Primary, Secondary / 332.0 / Medical Chart / 99.0 / 16.5 / 56.6 / -
1998-2000 / Incident Parkinsonism / Single Hospital; Inpatient, Outpatient / 191 / ICD-9-CM / Primary, Secondary / 332.1 / Medical Chart / 58.7 / 45.7 / 38.6 / -
2007,
USA123 / 1992-2000 / General / Population-based; Inpatient, Outpatient / 30469 / ICD-9-CM / - / 332.0 in physician claims / Self Report / 54.0 / 99.5 / 73.6 / -
1992-2000 / General / Population-based; Inpatient, Outpatient / 30469 / ICD-9-CM / - / 332.0, 332.1, 333.0, 333.1 in physician claims / Self Report / 57.0 / 99.2 / 62.3 / -
1992-2000 / General / Population-based; Inpatient, Outpatient / 30469 / ICD-9-CM / - / 332.0 in any claims / Self Report / 63.3 / 99.4 / 70.5 / -
1992-2000 / General / Population-based; Inpatient, Outpatient / 30469 / ICD-9-CM / - / 332.0, 332.1, 333.0, 333.1 in physician claims / Self Report / 66.1 / 99.0 / 60.1 / -
1992-2000 / General / Population-based; Inpatient, Outpatient / 30469 / ICD-9-CM / - / 332.0 in physician claims / Self Report or PD Drug use / 49.5 / 99.6 / 78.9 / -
1992-2000 / General / Population-based; Inpatient, Outpatient / 30469 / ICD-9-CM / - / 332.0, 332.1, 333.0, 333.1 in physician claims / Self Report or PD Drug use / 52.5 / 99.3 / 67.2 / -
1992-2000 / General / Population-based; Inpatient, Outpatient / 30469 / ICD-9-CM / - / 332.0 in any claims / Self Report or PD Drug use / 58.3 / 99.5 / 76.1 / -
1992-2000 / General / Population-based; Inpatient, Outpatient / 30469 / ICD-9-CM / - / 332.0, 332.1, 333.0, 333.1 / Self Report or PD Drug use / 61.1 / 99.1 / 65.1 / -
2009,
USA124 / 2001-2002 / Parkinson’s
Disease / Population-based; Outpatient / 332 / ICD-9-CM / - / ≥1 claim for 332 / Medical Chart / 100 / 0 / 75.6 / -
2001-2002 / Parkinson’s
Disease / Population-based; Outpatient / 332 / ICD-9-CM / - / ≥2 claims for 332 / Medical Chart / 89.2 / 28.4 / 79.4 / 46.0