What's happening
This bill creates a statewide Parkinson's disease registry and assessment program to collect, analyze, and report data for research and public health purposes.
Why it matters
Enables systematic tracking of Parkinson’s disease in New York. by requiring physicians and medical facilities to report cases and prescribed treatments, allowing for better understanding of disease prevalence and trends across populations, occupations, and regions.
Enhances research and public health response. as the registry will allow authorized researchers access to anonymized data, supporting investigations into environmental, occupational, and demographic risk factors, and helping policymakers target resources more effectively.
Establishes privacy and confidentiality safeguards. by mandating strict controls on access to patient information, with violations resulting in loss of access, thus balancing the need for data collection with individual privacy rights.
Coordinates state efforts and leverages outside expertise. by permitting the department to contract with research institutions and integrate Parkinson’s data with other public health databases, potentially accelerating discoveries in causes, treatments, and prevention strategies.
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Who cares
New York State Department of Health
The department would run a Parkinson's disease assessment program and registry, analyze incidence data, issue annual reports and protect patient confidentiality.
Physicians and medical care facilities
They would face reporting requirements when Parkinson's disease is diagnosed or a patient is prescribed medication used to treat Parkinson's disease or related neurological conditions.
People with Parkinson's disease
Their information would be collected with confidentiality protections, and the department would make information about research opportunities, clinical trials and awareness campaigns available on its website where practicable.
Medical researchers and New York research institutions
Qualified researchers could obtain confidential data under written confidentiality agreements, and a New York medical research institution could be authorized to oversee and maintain the registry.
Headline styles
Create Parkinson's Disease Registry
Plain English, a few words. Used as the page title.
Sponsors
No co-sponsors yet.
History
- Referred to health
Full text
3 pagesUnderlined is new[Struck] is removedOfficial text on nysenate.gov ↗
STATE OF NEW YORK
7185
IN SENATE (Prefiled)
January 3, 2018
Introduced by Sen. SERINO -- read twice and ordered printed, and when printed to be committed to the Committee on Health
AN ACT to amend the public health law, in relation to developing a Parkinson's disease assessment program in the state
The People of the State of New York, represented in Senate and Assembly, do enact as follows:
Section 1. The public health law is amended by adding a new article 18 to read as follows:
ARTICLE 18
PARKINSON'S DISEASE ASSESSMENT PROGRAM Section 1801. Definitions.
1802. Parkinson's disease registry.
§ 1801. Definitions. For the purposes of this article: 1. "Parkinson's disease" shall mean a chronic and progressive neurologic disorder resulting from deficiency of the neurotransmitter dopamine as the consequence of degenerative, vascular, or inflammatory changes in the area of the brain called the basal ganglia. Such disorder shall be characterized by tremor at rest, slow movements, and rigidity of movement, droopy posture, muscle weakness, and unsteady or shuffling gait; and
2. "Facility" shall mean any governmental or private agency, department, institution, clinic, laboratory, hospital, nursing care facility, health maintenance organization, association or other similar entity that provides medical care.
§ 1802. Parkinson's disease registry. 1. The department shall conduct a program of epidemiological assessments of the incidence of Parkinson's disease in the state. Such program shall include, but not be limited to, the monitoring of Parkinson's disease associated with suspected chemical agents encountered by the general public both in specific occupations and in the environment generally.
2. An attending physician or a person representing or employed by a facility as defined by the commissioner shall report the existence of Parkinson's disease to the department when such physician or other person diagnoses the presence of that illness or a patient is prescribed
EXPLANATION--Matter in italics (underscored) is new; matter in brackets
[ ] is old law to be omitted.
LBD13995-01-7
S. 7185 2
medication that is used to treat Parkinson's disease or related neurological conditions.
3. (a) The commissioner shall analyze available incidence data and prepare reports as necessary to identify Parkinson's disease hazards to:
(i) public health;
(ii) specific occupations; and
(iii) geographic areas and their interventions and remedies.
(b) The commissioner shall issue an annual report that shall be designated as a Parkinson's disease report and shall, at a minimum, contain information which the commissioner establishes as necessary to identify, locate and investigate the:
(i) occurrence;
(ii) frequency;
(iii) incidence; and
(iv) concentrations in particular occupations; cause, effect and prognosis of Parkinson's disease, and other relevant data and findings with respect thereto.
(c) Parkinson's disease reports and data shall be maintained by the department in a manner suitable for research purposes, and shall be made available to persons set forth in this article.
4. Notwithstanding any other provisions of law, all information collected pursuant to this article shall be confidential insofar as the identity of the individual patient is concerned and shall be used solely for the purposes as provided in this article. Access to such information shall be limited to the authorized employees of the department and persons with a valid scientific interest and qualifications, as defined by the commissioner, who are engaged in demographic, epidemioligical or other similar studies related to health, and who agree, in writing, to maintain confidentiality as established by the commissioner.
5. (a) The department shall maintain an accurate record of all persons who are given access to the information contained in such Parkinson's disease reports as established in subdivision three of this section. Such record shall include:
(i) the name of the person authorizing access;
(ii) the name, title, and organizational affiliation of persons given access; and
(iii) dates of access and the specific purpose for which information is to be used.
(b) The record of access shall be open to public inspection during normal operating hours of the department.
6. Persons with a valid scientific interest who are engaged in demographic, epidemiological, or other similar studies related to health who meet qualifications as determined by the department, and who agree, in writing, to maintain confidentiality, may be authorized access to confidential information. Any person who, in violation of a written agreement to maintain confidentiality, discloses any information provided pursuant to this section, or who uses information provided pursuant to this section in a manner other than that prescribed by the commissioner, may be denied further access to any confidential information maintained by the department.
7. Notwithstanding any other provisions of law, the department may authorize a New York medical research institution to oversee and maintain the Parkinson's disease registry upon a showing of the ability to collect and analyze information in a timely manner and maintain the confidentiality and privacy of all records housed therein. The commissioner shall remain responsible for ensuring reporting procedures,
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privacy compliance, and approval for access to the records are suitable and compliant with all rules and regulations.
8. The commissioner may enter into contracts as are necessary for the conduct of such program and may accept, on behalf of the state, grants of public or private funds for such program.
9. The commissioner may coordinate the Parkinson's disease registry with all other public health registries where practicable, including but not limited to article twenty and section two thousand four hundred one of this chapter, or any other epidemiological assessments conducted by the department to determine public health incidence rates and correlations with environmental factors, geographic locations, or any other statistically relevant information.
10. The registry shall provide information to supplement the coordinating council as provided by section two thousand four-a of this chapter. Upon the recommendation of the coordinating council and a majority vote, a designee shall be consulted to attend all council meetings to provide information and analysis of information contained within the Parkinson's disease registry and reports.
11. The department, where practicable, shall make available information regarding research opportunities, clinical trials, or public awareness campaigns on its website related to Parkinson's disease research, identification, and treatment.
12. The commissioner shall promulgate rules and regulations to implement the provisions of this article.
§ 2. This act shall take effect immediately.
Reflowed for reading: line numbers and page breaks removed. Cite the official text.
Sponsor's memo
Title of bill
An act to amend the public health law, in relation to developing a Parkinson's disease assessment program in the state
Purpose
Relates to the creation of a disease assessment program
Summary of provisions
Section 1: Amends the public health law to add a new article 18 that establishes a Parkinson's Disease Assessment Program. The Program will conduct epidemiological assessments of Parkinson's disease in the state including cases associated with suspected chemical agents encountered by the general public and specific occupations. Physicians and those employed in specified healthcare facilities will be required to report cases of Parkinson's disease diagnosis and the Commissioner will be required to analyze incidence data and issue an annual report. The registry will have privacy and confidentiality measures to protect patient information.
Section 2: Establishes the effective date.
Justification
It has been estimated that approximately one million Americans live with Parkinson's disease, which is more than the number of those persons diagnosed with multiple sclerosis, muscular dystrophy and Lou Gehrig's disease combined. Parkinson's disease is the second most common age related neurodegenerative disorder behind Alzheimer's disease. It is characterized by tremors, stiffness, loss of balance, slowness of move- ment, among other symptoms. In addition to these medical symptoms, those patients diagnosed with Parkinson's disease show increased risk of depression, social isolation, and financial impacts due to the costs of medication and healthcare. Despite the debilitating impacts of this condition, neither the causes nor trends of diagnoses of Parkinson's disease are well established. As such, there is not much consensus on whether it impacts certain populations, occupations, or geographic areas.
While recent research has suggested that there is a correlation between environmental factors (i.e. pesticides) and Parkinson's disease, there remains an absence of comprehensive data. Despite this lack of informa- tion there have been suggestions that there are geographic impacts. Studies have shown that Parkinson's disease prevalence is 2-10 times greater in the Northeast as compared to western and southern US states. In fact, a study by Washington University School of Medicine, Western New York State has one of the highest rates of Parkinson's disease diag- nosis nationwide. To that end, recent studies have also suggested that exposure to toxic fumes - particularly those inhaled by police, fire- fighters, and other first responders - can increase the risk of Parkinson's disease.
Given the prevalence of this condition and the significant impacts to patients, caregivers, and families, it is important that New York public health authorities begin to examine the incidence rates and statistical information associated with new cases. This legislation will make Parkinson's disease one of various reportable conditions in New York State, and will have New York join Nebraska, Utah, California, and Wash- ington in establishing a Parkinson's disease registry. The registry will maintain information surrounding diagnoses of Parkinson's disease so that medical researchers and public health officials may examine inci- dence rates, possible risk factors, and trends over time to help develop educational materials and further research programs to find a cure.
Legislative history
New bill.
Fiscal implications
To be determined.
Effective date
This act shall take effect immediately.
Summaries, headlines and scores are AI-generated from the official bill text. How we score bills. Source: NYS Open Legislation.