Table 3 Study populations and case ascertainment methods

From: Prevalence of Parkinson’s disease across North America

Study

Honolulu-Asia Aging Study

Ontario, Canada

Kaiser Permanente Northern California

Rochester Epidemiology Project

California PD registry project

US Medicare

Base population

8006 Japanese-American men born 1900–1919, living in Honolulu county, Hawaii, USA at baseline in 1965 and participating in the longitudinal Honolulu Heart Program

Residents of Ontario, Canada; all are provided health care paid for by the provincial government

Members of the Kaiser Permanente Northern California, a closed integrated health-care delivery system providing health insurance and health care to 25–30% of the population of Northern Californiaa

Residents of Olmsted county, Minnesota, USA

Residents of Kern, Tulare, Fresno, Santa Clara counties, California, USA

Residents of USA aged ≥65 years who use Medicare as their health-care insurer and whose insurance claims are released to Medicareb

Ascertainment method(s)/data source

Pre-1991: Hospitalization records, outpatient medical records, Post-1991: Screening in-person exam by trained research technician, positive cases examined by neurologist

Ontario Health-care administrative databases recording all inpatient and outpatient physician encounters

Medical record ascertainment that combined inpatient and outpatient diagnostic, pharmacy, treatment, and physician type15

Electronic screening for 53 H-ICDA codes for PD, parkinsonism, tremor, PSP, MSA, other extrapyramidal syndromes, non-specific neuro-degenerative diseases, followed by manual medical record review by neurologist28

Neurologists and large group practices asked to report all patients with ICD-9 code of PD (332) or other parkinsonism (332.1, 333.0, or 331.82). Trained abstractors manually extracted relevant elements of medical record

Medicare administrative claims database

Diagnostic criteria

Consensus diagnosis by movement disorders experts using hospitalization, outpatient neurologist records, and additionally after 1991 study screening examination and study neurologist’s standardized examination and Ward and Gibb criteria29

One hospitalization record or two outpatient visits with an assigned ICD diagnosis of PD (332 or G20) in the administrative record30

Algorithm that combines number of PD diagnoses, expertise of the physician making the diagnoses, and treatment

The presence of two of four cardinal signs: resting tremor, bradykinesia, rigidity, and impaired postural reflexes, without a known secondary cause, documented levodopa unresponsiveness or other atypical features28

ICD-9 code for PD (332). If more than one parkinsonism code was reported, manual medical record review by a movement disorder neurologist (CMT) to assign the most likely diagnosis

One ICD code for PD (332.0) and no atypical or secondary parkinsonism codes

Case definition validation method(s), if any

None

Medical record review. Sensitivity 72%, specificity 99%30

None

Clinicopathologic concordance 87% in 60 individuals31

A minimum of 10% validation using standardized chart abstraction protocol

None

  1. H-ICDA Hospital adaptation of ICD. 53 H-ICDA diagnostic codes: 7 codes for PD, 12 for parkinsonism, 10 for tremor, 8 for other extrapyramidal symptoms, 6 for nonspecific neurodegenerative diseases, 5 for multiple system atrophy, and 5 for progressive supranuclear palsy
  2. aMembers are representative of the population of Northern California with respect to age, sex, and race/ethnicity and slightly less likely to have very low or very high income27
  3. bWhile Medicare provides health insurance to 98% of the population aged ≥65 years, some individuals choose third-party medical insurance coverage and some health-care organizations or reimbursement programs do not release their claims data to Medicare due to privacy regulations or for other reasons