What are Parkinson's disease and parkinsonism?

    Parkinsonism is an umbrella term that refers to a set of symptoms related to movement. These motor symptoms include tremors, stiffness, slowness, and postural instability. Parkinsonism is most often caused by Parkinson’s disease.

    Parkinson's disease is a specific neurodegenerative disorder caused by deficiencies in the neurotransmitter dopamine in certain regions of the brain (basal ganglia). It is chronic and progressive, meaning symptoms get worse over time.

    Currently, over one million people in the U.S. are affected by Parkinson’s disease. People with Parkinson’s disease often experience both motor and non-motor symptoms. In some cases, patients experience non-motor symptoms, like loss of smell, before the onset of any motor symptoms.

    Atypical Parkinson’s disease is a group of diseases that also cause parkinsonism symptoms. They are sometimes called Parkinson’s plus. These neurodegenerative diseases share similar symptoms with Parkinson’s disease but have distinct characteristics and progress differently. Examples include:

    • Multiple system atrophy (MSA)
    • Corticobasal degeneration (CBD)
    • Progressive supranuclear palsy (PSP)
    • Lewy Body dementia

    Secondary parkinsonism is when other conditions cause parkinsonism symptoms. These conditions include:

    • Drug induced (medication side effects)
    • Vascular (small strokes)
    • Brain trauma (injury)
    • Encephalitis (inflammation of the brain)
    • Normal Pressure Hydrocephalus (excess fluid in the skull)

What are the common symptoms?

      Motor (Movement-Related) Symptoms:

    • Bradykinesia (slow movements, difficult to begin or perform movements)
    • Freezing (sudden inability to move when walking or changing direction)
    • Masked face (reduced facial expression, stiff or flat appearance)
    • Micrographia (small, cramped handwriting)
    • Postural instability (difficulty with coordination and balance, leading to increased risk of falls)
    • Reduced arm swing (decreased movement of the arms when walking)
    • Rigidity (stiffness in the limbs, trunk, or neck)
    • Shuffling gait (walking with small, dragging steps)
    • Tremors (shaking or trembling in hand, foot, or limbs at rest)

      Non-Motor Symptoms:

    • Anxiety
    • Bladder problems (urinary frequency or incontinence)
    • Bowel problems (constipation)
    • Depression
    • Fatigue
    • Loss of smell (anosmia)
    • Muscle aches, cramps or pain
    • Skin problems (sweating or changes in skin texture)
    • Sleep problems (insomnia, sleep problems or acting out dreams)
    • Speech problems (difficulty speaking clearly or monotone voice)
    • Swallowing problems (dysphagia, difficulty swallowing or choking)
    • Vision changes (dry eyes, double vision or trouble reading)
    • Weight changes (unexplained weight loss)

Who is more likely to develop Parkinson’s disease and parkinsonism?

Parkinson's disease and parkinsonism affect people of all ages, races, and sexes. However, certain factors increase the risk of developing them, including:

Parkinson's disease and atypical Parkinson's disease

  • Age: The risk increases with age, with most people diagnosed after the age of 60.
  • Genetics: Having a family history increases the risk, although only 10% of cases are caused by genetic mutations.
  • Sex: Men are 1.5 times more likely to develop Parkinson's disease than women.
  • Environmental factors: Exposure to certain chemicals or toxins, such as pesticides and herbicides, may increase the risk.
  • Other risk factors: Head trauma and sleep disorders may be associated with an increased risk.

Secondary parkinsonism

  • Age: Parkinsonism occurs more frequently after age 60.
  • Sex: Parkinsonism is slightly more common in males than females.
  • Environmental factors: Exposure to certain toxins may increase the risk.
  • Other risk factors: Head trauma, sleep disorders, and certain medications may be associated with an increased risk of developing parkinsonism.

How are Parkinson's disease and parkinsonism diagnosed?

Parkinson's disease and parkinsonism are diagnosed based upon a patient's medical history, physical exam, neurological exam, and family history. Presently, there is no single test for Parkinson's disease. However, the diagnosis may include blood tests or imaging studies such as CT scans, MRI, PET scans, or a DaTscan (Dopamine transporter scan).

How are Parkinson's disease and parkinsonism treated?

There is currently no known cure for Parkinson's disease. Treatment focuses on managing symptoms and improving individuals’ quality of life with medications, physical and other therapies, and sometimes surgery.

Treatment for parkinsonism depends on the underlying cause of this condition. Most forms of secondary parkinsonism are treatable, and some may go into remission.

Parkinson's disease and parkinsonism statewide data

The state dashboard includes statewide prevalence with annual and trend data for Parkinson's disease and parkinsonism for adults aged 18 years and older, and by major socio-demographic factors (e.g., age group and sex).

Parkinson's disease and parkinsonism data by region and county

The county dashboard includes regional and county prevalence for Parkinson’s disease and parkinsonism for adults aged 18 years and older. Data are visualized with maps, trend graphs, and data tables.

Key Findings: Among residents aged 18 years or older included in the New York State All-Payer Database:

  1. In 2022, over 55,000 individuals (39.8 per 10,000) had a diagnosis of parkinsonism or Parkinson’s disease. Of those, Parkinson’s disease is the most common diagnosis, accounting for 90% (nearly 50,000 cases), followed by Atypical Parkinson’s disease with about 13% (7,092 cases), and by secondary parkinsonism with 8% (4,524 cases).
  2. The prevalence of parkinsonism and Parkinson’s disease declined slightly from 2019 (44.8 per 10,000) to 2022 (39.8 per 10,000). Annual prevalence estimates from 2020 and subsequent data years may be impacted by interruptions in access to care due to the COVID-19 pandemic.
  3. The prevalence of parkinsonism and Parkinson’s disease increases steadily with age, with about 88% (more than 48,000 cases) among individuals aged 65 years and older in 2022. The prevalence of Parkinson’s disease and parkinsonism is 12.7 times higher among those aged 85 years or older (210.4 per 10,000), compared with those aged 55-59 years (16.6 per 10,000).
  4. Overall, the 2022 prevalence of parkinsonism and Parkinson's disease is nearly 1.4 times higher among males (46.5 per 10,000) compared with females (33.9 per 10,000). When looking at the three diagnoses individually:
    1. For Parkinson’s disease, the prevalence among males (42.6 per 10,000) is 1.4 times higher than among females (29.8 per 10,000).
    2. The prevalence is 1.2 times higher among males compared with females for both atypical Parkinson’s disease (5.5 per 10,000 vs. 4.7 per 10,000, respectively) and secondary parkinsonism (3.6 per 10,000 vs. 2.9 per 10,000, respectively).

Data export

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Background

To create parkinsonism and Parkinson’s disease case indicators for the New York State Parkinson’s Disease Dashboard, we used New York State All-Payer Database (APD) data to identify members diagnosed with parkinsonism and Parkinson’s disease. We present these indicators by age group, sex, region, and residence county.

Data Source

Public Health Law Section 2816 charges the New York State Department of Health to implement and maintain an APD. The New York APD is the single largest repository of health insurance claims data in the state. It includes claims from public (e.g., Medicaid and Medicare) and private/commercial payers providing insurance coverage to New York State residents. This includes Medicaid Managed Care, Medicaid Fee-for-Service, Medicare Fee-for-Service, Medicare Advantage, Qualified Health Plan, Essential Plan, Child Health Plus, and private/commercial plans.

The APD does not include claims from some federal insurance programs such as Tricare, Veterans' Affairs, and the Indian Health Service or from “self-funded” health plans created under the Employee Retirement Income Security Act of 1974, including the New York State Health Insurance Program's "Empire Plan" for public employees and employers. Additionally, the APD does not include claims from New Yorkers who are uninsured. Therefore, parkinsonism and Parkinson’s disease prevalence estimates do not include individuals who belong to insurance programs not included in the APD or who are uninsured. For the purpose of this analysis, the All-Payer claims data includes health plan enrollment and claims data. For more information about the All-Payer Database, please see: New York State All-Payer Database.

Methods

Each calendar year (January 1st – December 31st) of APD data from 2019 forward is referred to as a membership year. Individuals enrolled in the contributing health plans are referred to as members.

We calculated the following disease case indicators for each membership year:

  • • Parkinson’s disease prevalence
  • • Atypical Parkinson’s prevalence
  • • Secondary parkinsonism prevalence
  • • Total parkinsonism and Parkinson’s disease prevalence (overall/combined total of the three indicators above)

Denominator: Population (Aged 18 Years and Older)

To be counted in the denominator for any given membership year, members must meet the following inclusion criteria:

  • • Valid unique member identification number.
  • • Three months of active coverage in the membership year. Coverage months did not need to be consecutive or from the same insurance issuer.
  • • New York State residency in the last month of active coverage in the membership year.
  • • Valid sex information (male or female) in the membership year.

Numerators: Parkinsonism and Parkinson’s Disease Cases

Numerators for the three disease case indicators (Parkinson’s disease, atypical Parkinson’s, and secondary parkinsonism) were calculated first based on grouping disease diagnoses (using ICD-10-CM Codes, Table 1).

The numerator for the Total parkinsonism and Parkinson’s disease indicator (the overall/combined total of the three indicators above) includes members meeting inclusion criteria for one or more of the disease case indicators mentioned above.

Table 1. Reportable ICD-10 Codes and Their Clinical Descriptions
Disease Indicator ICD-10-CM Code Description
Parkinson's disease G20.0 Parkinson's disease without dyskinesia
G20.A1 Parkinson's disease without dyskinesia without mention of fluctuations
G20.A2 Parkinson's disease without dyskinesia with fluctuations
G20.B1 Parkinson's disease with dyskinesia without mention of fluctuations
G20.B2 Parkinson's disease with dyskinesia with fluctuations
G20.C Parkinsonism, unspecified
Atypical Parkinson's disease G13.8 Systemic atrophy primarily affecting central nervous system in other diseases classified elsewhere
G23.2 Striatonigral degeneration
G23.3 Hypomyelination with atrophy of the basal ganglia and cerebellum
G90.3 Multi-system degeneration of the autonomic nervous system
G23.1 Progressive supranuclear ophthalmoplegia
G31.85 Corticobasal degeneration
G31.83 Neurocognitive disorder with Lewy bodies
Secondary parkinsonism G21.0 Malignant neuroleptic syndrome
G21.11 Neuroleptic induced parkinsonism
G21.19 Other drug induced secondary parkinsonism
G21.2 Secondary parkinsonism due to other external agents
G21.3 Postencephalitic parkinsonism
G21.4 Vascular parkinsonism
G21.8 Other Secondary parkinsonism
G21.9 Secondary parkinsonism, unspecified

To be counted in one or more of the indicator numerators, members must meet the following inclusion criteria:

  • At least two claims (excluding laboratory claims) with a diagnosis code assigned to that indicator (see Table 1):
    • The diagnosis code may be a primary diagnosis or any other diagnosis type.
    • The claims must be within the past 24 months (the membership year or year prior, see Table 2 for more details).
    • The member must have had active coverage in the month of service for each claim.
    • There must be at least 30 days between the two claims to avoid counting diagnostic testing used to rule out the possibility of a diagnosis.
Table 2. Eligible Claim Years for Identifying Parkinsonism and Parkinson’s Disease Cases per Membership Year
Membership YearEligible Claim Years (Membership Year or Year Prior)
2019 2018 2019
2020 2019 2020
2021 2020 2021
2022 2021 2022

Please Note:

The disease case indicators are not mutually exclusive. A member may meet criteria for and be counted towards more than one indicator numerator in a given membership year. For example, a member who met the criteria for both Parkinson’s disease and atypical Parkinson’s would be counted in each indicator numerator for that membership year. Therefore, we do not recommend summing numerators across multiple indicators.

Although members may meet criteria for and be counted towards more than one indicator numerator in a given membership year, members are only counted once towards the Total parkinsonism and Parkinson’s disease indicator numerator.

A member who meets numerator criteria in a given membership year may not be counted in subsequent membership years if they no longer meet indicator inclusion criteria in these subsequent years.

Prevalence Estimates (Dashboard Indicators)

The overall prevalence for parkinsonism and Parkinson’s disease is low; therefore, we calculated the prevalence per 10,000 members (aged 18 years and older).

Prevalence for total parkinsonism and Parkinson’s disease, Parkinson’s disease, atypical Parkinson’s, and secondary parkinsonism for each membership year was calculated as (Numerator/Denominator)*10,000.

Prevalence estimates are presented overall and by age group, sex, region, and residence county. Prevalence estimates are suppressed (not displayed) if there are between 1 and 10 cases in the numerator.

Regional Schemas

Data are presented on this dashboard according to multiple regional/sub-regional schemas that group counties together into larger geographic regions of the state.

The Census Informed Sub-regional (CISR) schema was developed by the Office of Science (OS) Center for Population Health Science (CPHS) for visualization of population health data. The schema maintains the integrity of the Department’s four Regional Offices and their boundaries and is informed by core based statistical areas (CBSA) delineated every 10 years by the Office of Management and Budget. Please see this document for information on how the CISR schema was developed.

The Delivery System Reform Incentive Payment Program (DSRIP) schema was initially developed for the purpose of implementing the Medicaid Redesign Team (MRT) Waiver Amendment in New York State. Since then, the schema has been adopted for use by many other programs within the Department and is still used by New York State’s Medicaid program on their dashboards to visualize Medicaid utilization data even though the DSRIP Program ended in March 2020. For more information about the MRT, please see Redesigning New York's Medicaid Program.

Limitations

Estimates for this analysis do not come from a longitudinal disease registry. They are rather produced by analyzing the New York State APD for serial cross-sectional results.

Numerator and denominator estimates reflect care received via health care enrollment and service claims, therefore, they are potentially impacted by access to care patterns and interruptions to access to care such as the COVID-19 pandemic. Additionally, because the APD does not include information from certain health insurance programs or from those who are not insured, these estimates may not reflect the true prevalence of parkinsonism and Parkinson’s disease among the general New York State adult population.

Member counts are based on unique values of an APD Member ID, which links members to information submitted by multiple insurers. While much effort is made to ensure correct linking, these counts may reflect more or fewer members identified with a unique ID than actual people covered.

Every effort has been made to limit the data to just New York State residents, but data may include data for out-of-state members if those individuals are enrolled in an insurance plan that is mandated by New York State legislation to submit data. These circumstances may be more common among older member populations who may be more likely to be enrolled in more than one type of insurance program or plan and/or more likely to live at multiple residences throughout the year.

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If you have questions about the reports, please contact: phiginfo@health.ny.gov