Kentucky Revised Statutes Title XVIII. Public Health § 214.375.Definitions; Kentucky Parkinson's Disease Research Registry; Kentucky Parkinson's Disease Research Registry Advisory Committee; duties of the cabinet; provider reporting requirements; data collection; reports

(a) “Advisory committee” means the Kentucky Parkinson's Disease Research Registry Advisory Committee established under subsection (3) of this section;

(b) “Cabinet” means the Cabinet for Health and Family Services;

(c) “Movement disorder center” means a health facility licensed under KRS Chapter 216B that operates outpatient clinics or ambulatory care facilities that employ movement disorder health care providers;

(d) “Movement disorder health care provider” means a licensed physician or osteopath licensed under KRS Chapter 311 that is fellowship trained in movement disorders as specified by either the American Academy of Neurology's Movement Disorders Section or the Movement Disorder Society's Pan American Section;

(e) “Parkinson's disease” means a chronic and progressive neurologic disorder resulting from a deficiency of the neurotransmitter dopamine as a consequence of specific degenerative changes in the area of the brain called the basal ganglia characterized by tremor at rest, slow movements, muscle rigidity, stooped posture, and unsteady or shuffling gait;

(f) “Parkinsonisms”:

(g) “Registry” means the Kentucky Parkinson's Disease Research Registry established in subsection (2) of this section; and

(h) “Secretary” means the secretary of the cabinet.

(3)(a) The secretary shall establish the Kentucky Parkinson's Disease Research Registry Advisory Committee to assist in the development and implementation of the registry, determine what data will be collected, and advise the cabinet.

(b) The advisory committee shall be appointed by the secretary and include at least one (1):

(a) Promulgate administrative regulations in consultation with the advisory committee and in accordance with KRS Chapter 13A to:

(b) Receive and collect data for the registry on the incidence and prevalence of Parkinson's disease and Parkinsonisms in Kentucky and related epidemiological data, and may enter into data-sharing contracts with data-reporting entities and their associated medical record system vendors to securely and confidentially receive information related to Parkinson's disease testing, diagnosis, and treatment; and

(c) Be responsible for any costs incurred in administering the registry and implementing this section.

(5)(a) Beginning January 1, 2026, each movement disorder center that treats a patient with Parkinson's disease and each movement disorder health care provider who treats or diagnoses Parkinson's disease or Parkinsonisms for a patient not otherwise reported shall submit a Parkinson's disease report to the cabinet in a format required or approved by the cabinet.

(c) To ensure compliance with the reporting and notification requirements of this subsection, the secretary or his or her agent may, upon reasonable notice, inspect a representative sample of the medical records of patients admitted, diagnosed, or treated for Parkinson's disease or Parkinsonisms at a movement disorder center.

(d) A movement disorder center or movement disorder health care provider who in good faith submits a report in accordance with paragraph (a) of this subsection is not liable in any cause of action arising from the submission of the report.

(e) A movement disorder center or movement disorder health care provider may use automated reporting methods supplied by the cabinet or the Kentucky Health Information Exchange to meet the requirements of this subsection.

(7)(a) The cabinet may enter into agreements to furnish data collected in the registry to other states' Parkinson's disease registries, federal Parkinson's disease control agencies, local health officers, or health researchers not described in subsection (6) of this section for the study of Parkinson's disease.

(b) Before confidential information is disclosed pursuant to paragraph (a) of this subsection, the out-of-state registry, agency, officer, or researcher shall agree in writing to maintain the confidentiality of the information. A researcher shall also:

(8)(a) Except as specifically provided in this section, all information collected pursuant to this section shall be confidential.

(b) Notwithstanding any other provision of law, a disclosure authorized by this section shall include only the information necessary for the stated purpose of the requested disclosure, used for the approved purpose, and not be further disclosed.

(c) Provided the security of confidentiality has been documented, the furnishing of confidential information to the cabinet or its authorized representative in accordance with this section shall not expose any person, agency, or entity furnishing information to liability, and shall not be considered a waiver of any privilege or a violation of a confidential relationship.

(d) The cabinet shall maintain an accurate record of all persons who are given access to information collected by the cabinet pursuant to this section, which shall include:

(e) Notwithstanding any other provision of law, information collected by the cabinet pursuant to this section shall not be:

(a) Prohibit the publication by the cabinet of reports and statistical compilations that do not in any way identify individual patients, cases, or sources of information;

(b) Restrict in any way a patient's access to his or her own information; or

(c) Prohibit movement disorder center or movement disorder health care providers from maintaining their own facility-based Parkinson's disease registries.

(10)(a) Nothing in this section shall be deemed to compel any individual to submit to any medical examination or supervision by the cabinet, any of its authorized representatives, or an approved researcher.

(b) A person who seeks information or obtains registry data pursuant to this section shall not contact a patient on the registry or the patient's family unless the cabinet has first obtained permission for the contact from the patient or the patient's family.

(12)(a) By October 1, 2027, and October 1 of each year thereafter, the cabinet shall submit to the Legislative Research Commission for referral to the Interim Joint Committee on Health Services a yearly program summary update that includes:

(b) In consultation with the advisory committee, the cabinet may include recommendations on necessary changes to the registry in the yearly program summary update.

(c) The cabinet shall publish the yearly program summary update in a downloadable format on the website created under subsection (13) of this section.