Office of Legislative Services
State House Annex
P.O. Box 068
Trenton, New Jersey 08625
Legislative Budget and Finance Office
Phone (609) 847-3105
Fax (609) 777-2442
www.njleg.state.nj.us
LEGISLATIVE FISCAL ESTIMATE
[First Reprint]
SENATE, No. 2339
STATE OF NEW JERSEY
221st LEGISLATURE
DATED: MAY 3, 2024
SUMMARY
Synopsis: Establishes State Parkinson's disease registry.
Type of Impact: Annual State expenditure increase.
Agencies Affected: Department of Health.
Office of Legislative Services Estimate
Fiscal Impact Annual
State Expenditure Increase Up to $1.0 million
The Office of Legislative Services (OLS) estimates that this bill will result in increased annual
expenditures of up to $1.0 million by the Department of Health in order to develop and
maintain a State Parkinson’s Disease Registry, as described in the bill. This estimate is based
on the experiences of several other similar registries.
BILL DESCRIPTION
This bill requires the Department of Health to oversee the creation and management of a
Statewide Parkinson’s disease registry. The registry will collect data on the incidence of
Parkinson's disease and Parkinsonisms within the State. Health care providers, including hospitals
and other health care facilities and health care practitioners, that diagnose or treat people diagnosed
with Parkinson's disease or Parkinsonisms will be required to report each unique case of
Parkinson's disease or Parkinsonisms to the registry. The department will determine the specific
mandatory and permissive data points to be collected in the registry. Registry information will
generally be deemed confidential, but may be made available to various entities, including other
Parkinson’s disease registries, public health entities, and researchers, under certain circumstances.
The department will be required to prepare an annual report concerning registry information and
to maintain a publicly accessible webpage providing information about the registry and links to
the department’s annual reports. The department will additionally be required to establish a FE to S2339 [1R]
2
Parkinson’s disease registry advisory council to assist in the development of the registry, determine
what data will be collected, and advise the department as to the implementation of the bill.
FISCAL ANALYSIS
EXECUTIVE BRANCH
None received.
OFFICE OF LEGISLATIVE SERVICES
The OLS estimates that this bill will result in increased annual expenditures of up to $1.0
million by the Department of Health in order to develop and maintain a State Parkinson’s Disease
Registry, as described in the bill. Costs will depend on a number of factors, including: the
information technology costs necessary to develop and maintain the registry to allow information
submission; if the registry is established by the department or if the department chooses to enter
into a contract with another entity to perform these duties; the number of additional staff that may
need to be hired to perform associated duties; and the availability of non-State funding, possibly
through the federal government or private grants, to support the registry. The department will also
incur costs to produce an annual report and to maintain a publically facing website, as required
under the bill.
This estimate is based on the experiences of several other similar registries, in New Jersey and
elsewhere, with adjustments made for disease prevalence of each registry and for the population
of the state served by the registry. For example, the New Jersey Department of Health currently
maintains a Cancer Registry. In fiscal years 2022 through 2024, the registry has received annual
funding of $1.8 million: $393,000 in State funds and $1.4 million in federal funds. Moreover, in
2021, the State was also awarded a $9.1 million federal grant, which will to be used to support the
registry’s core infrastructure, as well as additional research activities, over a seven-year period, for
an average annual funding of $1.3 million.
Parkinson’s disease rates are significantly lower than cancer rates, however, which will affect
the cost of each type of registry. The Parkinson's Foundation estimates that nearly 90,000 people
are diagnosed with Parkinson's disease in the United States each year. According to the American
Cancer Society, the number of new cancer diagnoses each year is 1.9 million.
While other states have implemented Parkinson’s disease registries, the overall
implementation and maintenance costs are not widely available. The California Parkinson’s
Disease Registry is the largest in the nation, with a state population of 39.2 million, and was
originally established in 2017. In FY 2022, California appropriated $8.4 million to fund the
registry over a four-year period, at $2.1 million annually, and to expand it to other
neurodegenerative diseases. Prior to this funding, the state was expending approximately $1.0
million annually to support the registry. Alternatively, analysis of bills that establish Parkinson’s
disease registries in states such as Nevada, with a population of 3.1 million, and Missouri, with a
population of 6.2 million, estimate the annual cost of establishing a registry would be
approximately $100,000 and $250,000 in the two states, respectively. For reference, New Jersey’s
population is approximately 9.3 million.
The OLS notes that government-owned hospitals may experience modest increases in
technology or staff costs to submit the required information. These costs will depend on the data
submission method available under the newly developed registry. Other minor expenditures may FE to S2339 [1R]
3
be realized by the State in reimbursing members of the advisory council, established under the bill,
for expenses incurred in the performance of their official duties.
Section: Human Services
Analyst: Sarah Schmidt
Lead Research Analyst
Approved: Thomas Koenig
Legislative Budget and Finance Officer
This legislative fiscal estimate has been produced by the Office of Legislative Services due to the
failure of the Executive Branch to respond to our request for a fiscal note.
This fiscal estimate has been prepared pursuant to P.L.1980, c.67 (C.52:13B-6 et seq.).