{"data":{"id":"us-ky/krs-214.375","jurisdiction":"us-ky","citation":"KRS 214.375","heading":"Definitions -- Kentucky Parkinson's Disease Research Registry --","body":"Kentucky Parkinson's Disease Research Registry Advisory Committee --\nDuties of the cabinet -- Provider reporting requirements -- Data collection --\nReports.\n(1) As used in this section:\n(a) \"Advisory committee\" means the Kentucky Parkinson's Disease Research\nRegistry Advisory Committee established under subsection (3) of this section;\n(b) \"Cabinet\" means the Cabinet for Health and Family Services;\n(c) \"Movement disorder center\" m eans a health facility licensed under KRS\nChapter 216B that operates outpatient clinics or ambulatory care facilities that\nemploy movement disorder health care providers;\n(d) \"Movement disorder health care provider\" means a licensed physician or\nosteopath licensed under KRS Chapter 311 that is fellowship trained in\nmovement disorders as specified by either the American Academy of\nNeurology's Movement Disorders Section or the Movement Disorder\nSociety's Pan American Section;\n(e) \"Parkinson's disease\" means a  chronic and progressive neurologic disorder\nresulting from a deficiency of the neurotransmitter dopamine as a\nconsequence of specific degenerative changes in the area of the brain called\nthe basal ganglia characterized by tremor at rest, slow movements, m uscle\nrigidity, stooped posture, and unsteady or shuffling gait;\n(f) \"Parkinsonisms\":\n1. Means Parkinson's disease -related conditions that cause a combination\nof movement abnormalities such as tremor at rest, slow movement,\nmuscle rigidity, impaired speech , and muscle stiffness, which often\noverlap with and can evolve from what appears to be Parkinson's\ndisease; and\n2. Includes multiple system atrophy, dementia with Lewy bodies,\ncorticobasal degeneration, and progressive supranuclear palsy;\n(g) \"Registry\" means the Kentucky Parkinson's Disease Research Registry\nestablished in subsection (2) of this section; and\n(h) \"Secretary\" means the secretary of the cabinet.\n(2) The Kentucky Parkinson's Disease Research Registry is hereby established within\nthe cabinet under the direction of the secretary, who may enter into contracts,\ngrants, or other agreements as necessary to admin ister the registry in accordance\nwith this section.\n(3) (a) The secretary shall establish the Kentucky Parkinson's Disease Research\nRegistry Advisory Committee to assist in the development and\nimplementation of the registry, determine what data will be col lected, and\nadvise the cabinet.\n(b) The advisory committee shall be appointed by the secretary and include at\nleast one (1):\n1. Neurologist;\n2. Movement disorder specialist;\n3. Primary care provider;\n4. Physician informaticist;\n5. Patient living with Parkinson's disease;\n6. Public health professional;\n7. Population health researcher familiar with health data registries;\n8. Parkinson's disease researcher;\n9. Representative from the University of Kentucky College of Medicine\nwith specific expertise in Parkinson's disease; and\n10. Representative from the University of Louisville School of Medicine\nwith specific expertise in Parkinson's disease.\nThe secretary may appoint additional members to the advisory committee as\nhe or she deems necessary.\n(4) The cabinet shall:\n(a) Promulgate administrative regulations in consultation with the advisory\ncommittee and in accordance with KRS Chapter 13A to:\n1. Designate Parkinson's disease and identified Parkinsonisms as diseases\nthat are required to be reported to the cabinet;\n2. Establish a system of collection and dissemination of information on the\nincidence and prevalence of Parkinson's disease and Parkinsonisms in\nKentucky and related epidemiological data;\n3. Identify specific data points to be collected based on the fol lowing four\n(4) core categories of data:\na. Patient demographics;\nb. Geography;\nc. Diagnosis; and\nd. Sufficient information to allow for deduplication of patient records\nin the registry;\n4. Periodically review and revise data points to be collected to ensure data\nand data collection procedures adapt to new knowledge and technology;\n5. Establish a coding system that removes a patient's name, address, Social\nSecurity number, fingerprints, photograph, and any other information by\nwhich the identity of a patient can be determined with reasonable\naccuracy; and\n6. Develop guidelines and procedures for reviewing and approving\nrequests to use registry data for valid scientific research;\n(b) Receive and collect data for the registry on the incidence and prevalence of\nParkinson's disease and Parkinsonisms in Kentucky and related\nepidemiological data, and may enter in to data -sharing contracts with data -\nreporting entities and their associated medical record system vendors to\nsecurely and confidentially receive information related to Parkinson's disease\ntesting, diagnosis, and treatment; and\n(c) Be responsible for any co sts incurred in administering the registry and\nimplementing this section.\n(5) (a) Beginning January 1, 2026, each movement disorder center that treats a\npatient with Parkinson's disease and each movement disorder health care\nprovider who treats or diagnose s Parkinson's disease or Parkinsonisms for a\npatient not otherwise reported shall submit a Parkinson's disease report to the\ncabinet in a format required or approved by the cabinet.\n(b) 1. Movement disorder centers and movement disorder health care\nproviders shall provide each patient diagnosed with Parkinson's disease\nor Parkinsonisms with a notice regarding the reporting and collection of\ninformation and patient data on Parkinson's disease.\n2. A patient who does not wish to participate in the collection o f data for\nthe purposes of research in the registry may affirmatively opt out in\nwriting after an opportunity to review the documents and ask questions.\n3. If a patient has chosen not to participate and has opted out under\nsubparagraph 2. of this paragraph, the movement disorder center and the\nmovement disorder health care provider shall only report that a\nParkinson's disease case exists and no further data shall be reported to\nthe cabinet for the purposes of the registry.\n4. If a patient has been diagnosed  with Parkinson's disease or\nParkinsonsisms in error, the movement disorder center and the\nmovement disorder health care provider shall notify the cabinet and the\ncabinet shall remove the patient from the registry.\n(c) To ensure compliance with the reporti ng and notification requirements of this\nsubsection, the secretary or his or her agent may, upon reasonable notice,\ninspect a representative sample of the medical records of patients admitted,\ndiagnosed, or treated for Parkinson's disease or Parkinsonisms at a movement\ndisorder center.\n(d) A movement disorder center or movement disorder health care provider who\nin good faith submits a report in accordance with paragraph (a) of this\nsubsection is not liable in any cause of action arising from the submission of\nthe report.\n(e) A movement disorder center or movement disorder health care provider may\nuse automated reporting methods supplied by the cabinet or the Kentucky\nHealth Information Exchange to meet the requirements of this subsection.\n(6) The cabinet shall make data from the registry, with or without identifiers, available\nto researchers that have the approval of an institutional review board in accordance\nwith requirements of the Federal Policy for the Protection of Human Subjects, 45\nC.F.R. pt. 46, and, as applicable, 21 C.F.R. pt. 56, 45 C.F.R. pt. 164, KRS 216.2920\nto 216.2929, 900 KAR 7:030 and 7:040, and any other relevant federal or state\nrequirements.\n(7) (a) The cabinet may enter into agreements to furnish data collected in the registry\nto other s tates' Parkinson's disease registries, federal Parkinson's disease\ncontrol agencies, local health officers, or health researchers not described in\nsubsection (6) of this section for the study of Parkinson's disease.\n(b) Before confidential information is d isclosed pursuant to paragraph (a) of this\nsubsection, the out -of-state registry, agency, officer, or researcher shall agree\nin writing to maintain the confidentiality of the information. A researcher\nshall also:\n1. Obtain approval of the researcher's resp ective committee for the\nprotection of human subjects under 45 C.F.R. pt. 46; and\n2. Provide documentation to the cabinet that demonstrates to the cabinet's\nsatisfaction that the researcher has established the procedures and ability\nto maintain the confidentiality of the information.\n(8) (a) Except as specifically provided in this section, all information collected\npursuant to this section shall be confidential.\n(b) Notwithstanding any other provision of law, a disclosure authorized by this\nsection shall include only the information necessary for the stated purpose of\nthe requested disclosure, used for the approved purpose, and not be further\ndisclosed.\n(c) Provided the security of confidentiality has been documented, the furnishing\nof confidential informati on to the cabinet or its authorized representative in\naccordance with this section shall not expose any person, agency, or entity\nfurnishing information to liability, and shall not be considered a waiver of any\nprivilege or a violation of a confidential relationship.\n(d) The cabinet shall maintain an accurate record of all persons who are given\naccess to information collected by the cabinet pursuant to this section, which\nshall include:\n1. The name of the person authorizing access;\n2. Name, title, address, and organizational affiliation of persons given\naccess;\n3. Dates of access; and\n4. The specific purpose for which accessed information is to be used.\nThe record of access shall be open to public inspection during normal\noperating hours of the cabinet.\n(e) Notwithstanding any other provision of law, information collected by the\ncabinet pursuant to this section shall not be:\n1. Available for subpoena or disclosed, discoverable, or compelled to be\nproduced in any civil, criminal, administrative, or other proceeding; or\n2. Deemed admissible as evidence in any civil, criminal, administrative, or\nother proceeding for any reason.\n(9) This section does not:\n(a) Prohibit the publication by the cabinet of reports and statistical compilations\nthat do not in any way identify individual patients, cases, or sources of\ninformation;\n(b) Restrict in any way a patient's access to his or her own information; or\n(c) Prohibit movement disorder center or movement disorder health care\nproviders from maintaini ng their own facility -based Parkinson's disease\nregistries.\n(10) (a) Nothing in this section shall be deemed to compel any individual to submit to\nany medical examination or supervision by the cabinet, any of its authorized\nrepresentatives, or an approved researcher.\n(b) A person who seeks information or obtains registry data pursuant to this\nsection shall not contact a patient on the registry or the patient's family unless\nthe cabinet has first obtained permission for the contact from the patient or the\npatient's family.\n(11) The cabinet shall provide notice of the mandatory reporting of Parkinson's disease\nand Parkinsonisms required under this section on its website and to professional\nassociations representing movement disorder center and movement disorde r health\ncare providers.\n(12) (a) By October 1, 2027, and October 1 of each year thereafter, the cabinet shall\nsubmit to the Legislative Research Commission for referral to the Interim\nJoint Committee on Health Services a yearly program summary update that\nincludes:\n1. The incidence and prevalence of Parkinson's disease and Parkinsonisms\nin the state by county;\n2. The number of records that have been reported to the cabinet and\nincluded in the registry; and\n3. Demographic information, including but not limi ted to patients' age,\ngender, and race.\n(b) In consultation with the advisory committee, the cabinet may include\nrecommendations on necessary changes to the registry in the yearly program\nsummary update.\n(c) The cabinet shall publish the yearly program sum mary update in a\ndownloadable format on the website created under subsection (13) of this\nsection.\n(13) By October 1, 2027, the cabinet shall create, and update annually thereafter, the\nKentucky Parkinson's Disease Research Registry website where the publi c can find\ninformation related to the Parkinson's disease and the registry, the yearly program\nsummary update, and any other information deemed relevant by the advisory\ncommittee.","path":["KRS Chapter 214"],"source_url":"https://apps.legislature.ky.gov/law/statutes/statute.aspx?id=56265","current_through":"Includes enactments through the 2026 Regular Session","vintage":"09/05/2026","retrieved_at":"2026-09-05T20:52:18Z","sha256":"c29848945ddc88da32126cda4378d06c3563f903ff7595c70008f2d7e0a72a46","source_id":"us-ky","stale":false,"prev":"us-ky/krs-214.370","next":"us-ky/krs-214.400"},"notice":"GroundRules: Original legal text. Not legal advice."}