Bill > A1155

Introduced Session

This bill requires the Department of Health (DOH) to establish a State Parkinson's disease registry. Parkinson's disease is a chronic and progressive neurologic disorder resulting from deficiency of the neurotransmitter dopamine as the consequence of specific degenerative changes in the area of the brain called the basal ganglia. Parkinson's disease is characterized by tremor at rest, slow movements, muscle rigidity, stooped posture, and unsteady or shuffling gait. Parkinsonisms are related movement abnormalities and conditions that may overlap with or evolve from Parkinson's disease. Under this bill, the DOH is 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, such as physicians, physician assistants, and advanced practice nurses, 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 DOH 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. Patients will have the opportunity to opt out of inclusion in the registry, in which case only the incidence of a Parkinson's diagnosis will be reported. The DOH will be required to prepare an annual report concerning registry information and will be required to maintain a publicly- accessible webpage providing information about the registry and links to the DOH's annual reports. The DOH will additionally be required to establish a Parkinson's disease registry advisory council to assist in the development of the registry, determine what data will be collected, and advise the DOH as to the implementation of the bill. Public health agencies have long recognized that population-based data registries are required to estimate the incidence and prevalence of non-communicable chronic diseases. Registries have been developed throughout the world for the purpose of surveillance of these diseases to inform public health agencies and the public on the extent of the disease and to identify trends amidst population centers to support the development of public health interventions. States that have adopted statewide Parkinson's disease registries include California, Nebraska, Utah, and Washington. A population- based registry is necessary to generate the basic data that will help researchers, treatment providers, and legislators determine the causes of the disease, evaluate the efficacy of treatment, uncover inequities in Parkinson's disease healthcare, and make decisions about the allocation of resources for prevention and treatment. It is the sponsor's belief that a State Parkinson's disease registry will enable the State to better understand the full, diverse, and heterogeneous nature of Parkinson's disease among New Jerseyans and ensure that the regional nuances and trends are captured in effort to minimize over or underrepresentation.

AI Summary

Committee Categories

Joe Danielsen (D)*, 

Introduced, Referred to Assembly Health Committee (on 01/13/2026)

Official Document