§ 2017 — Establishment of registry

§ 2017. Establishment of registry. 1. The department shall establish a\nfrontotemporal degeneration registry for the collection of information\non the rate of clinical diagnoses of FTD disorders. The department shall\nconsult with FTD disorders experts, including neurologists, patients\nliving with FTD disorders, and FTD disorders researchers to assist in\nthe development and implementation of such registry, and to determine\nwhat data shall be collected.\n 2. All information maintained by the department under the provisions\nof this section shall be confidential except as necessary to carry out\nthe provisions of this section and shall not be released for any other\npurpose.\n 3. The department may enter into an agreement to provide data\ncollected in the frontotemporal degeneration registry to the federal\nCenters for Disease Control and Prevention, or successor agency, to\nlocal health officers, or health researchers for the study of FTD\ndisorders for public health and research purposes. Data shall be\nprovided in summary, statistical, aggregate, or other form such that no\nindividual person can be identified.\n 4. On or before January first, two thousand twenty-seven, the\ndepartment shall create and maintain a public website called the "New\nYork state frontotemporal degeneration registry" which shall include\ninformation on the rate of clinical diagnoses of FTD disorders in the\nstate by county, and demographic information on affected patients.\n