N.Y. Public Health Law § 2012: Establishment of registry

§ 2012. Establishment of registry. 1. The department shall establish a

Parkinson's disease registry for the collection of information on the

incidence and prevalence of Parkinson's disease and Parkinsonisms. The

department may consult with Parkinson's disease experts, including

neurologists, patients living with Parkinson's disease, and Parkinson's

disease researchers to assist in the development and implementation of

such registry, and to determine what data shall be collected.

2. All information maintained by the department under the provisions

of this section shall be confidential except as necessary to carry out

the provisions of this section and shall not be released for any other

purpose.

3. The department may enter into an agreement to provide data

collected in the Parkinson's disease registry to the federal Centers for

Disease Control and Prevention, or successor agency, to local health

officers, or health researchers for the study of Parkinson's disease for

public health and research purposes. Data shall be provided in summary,

statistical, aggregate, or other form such that no individual person can

be identified.

4. On or before January first, two thousand twenty-six, the department

shall create and maintain a public website called the "New York state

Parkinson's disease registry" which shall include information on the

incidence and prevalence of Parkinson's disease and Parkinsonisms in the

state by county, and demographic information on affected patients.