| Last Action | 03/13/25: floor amendment (1) filed to Committee Substitute |
|---|---|
| Title | AN ACT relating to Parkinson's disease. |
| Bill Documents |
Current
Introduced |
| Bill Request Number | 288 |
| Sponsors | B. Storm, D. Carroll, M. Deneen, S. Funke Frommeyer, R. Girdler, R. Mills, C. Richardson, L. Tichenor |
| Summary of Original Version | Create a new section of KRS Chapter 214 to define terms; establish the Kentucky Parkinson's Disease Research Registry within the Cabinet for Health and Family Services; direct the secretary of the cabinet to establish the Kentucky Parkinson's Disease Research Registry Advisory Committee and make appointments; require the cabinet to promulgate administrative regulations to designate Parkinson's disease and the identified Parkinsonisms as diseases that are required to be reported to the cabinet, establish a system of collection and dissemination of information on the incidence and prevalence of Parkinson's disease in Kentucky through the registry, identify data points to be collected, establish a coding system to safeguard patients' privacy, and develop guidelines for sharing registry data for research purposes; require the cabinet to collect and receive data for the registry; authorize the cabinet to enter into data-sharing contracts; require all health facilities and licensed health care providers to submit Parkinson's disease reports to the cabinet beginning on January 1, 2026; require facilities and providers to provide patients with notice of the submission of data to the registry and an opportunity to opt out of having their information shared; require the cabinet to make the registry data available to researchers in compliance with the Federal Policy for the Protection of Human Subjects and other federal and state privacy laws and regulations; authorize the sharing of data with other registries, agencies, and officers if confidentiality requirements are followed; provide that sharing of information in accordance with security and privacy requirements does not expose a person to liability; direct the cabinet to maintain an accurate record of all persons who have been granted access to registry data and make the record available to the public; state that nothing compels an individual to submit to any medical examination; prohibit researchers from contacting a patient or patient's family unless the cabinet has first obtained the patient's permission; require the cabinet to submit a yearly program summary update to the Interim Joint Committee on Health Services and establish a registry website where the public can access the report and other information on Parkinson's disease. |
| Index Headings of Original Version |
Data Processing - Parkinson's disease, state registry, patient data, reporting requirement Diseases - Parkinson's disease, state registry, patient data, reporting requirement Health and Medical Services - Kentucky Parkinson's Disease Research Registry, data points, collection and dissemination procedure Hospitals and Nursing Homes - Parkinson's disease, state registry, patient data, reporting requirement Physicians and Practitioners - Parkinson's disease, state registry, patient data, reporting requirement State Agencies - Cabinet for Health and Family Services, Kentucky Parkinson's Disease Research Registry Advisory Boards, Commissions, and Committees - Kentucky Parkinson's Disease Research Registry Advisory Committee Administrative Regulations and Proceedings - Kentucky Parkinson's Disease Research Registry, data points, collection and dissemination procedure Reports Mandated - Kentucky Parkinson's Disease Research Registry yearly summary update |
| Jump to Proposed Amendments |
Senate Committee Substitute 1 House Committee Substitute 1 House Committee Amendment 1 House Floor Amendment 1 |
| Votes | Vote History |
| 01/07/25 |
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| 01/09/25 |
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| 02/26/25 |
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| 02/27/25 |
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| 02/28/25 |
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| 03/04/25 |
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| 03/11/25 |
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| 03/12/25 |
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| 03/13/25 |
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| Amendment | Senate Committee Substitute 1 |
|---|---|
| Summary | Retain original provisions, except add representatives from the University of Kentucky College of Medicine and the University of Louisville School of Medicine to the Kentucky Parkinson's Disease Research Registry Advisory Committee; require facilities and providers to inform the cabinet of an erroneous diagnosis of Parkinson's disease or Parkinsonsims and require the cabinet to remove the patient from the registry; permit facilities and providers to use automated reporting methods supplied by the cabinet or the Kentucky Health Information Exchange; extend the deadlines for the cabinet to submit a yearly program summary and to establish a registry website to October 1, 2027. |
| Index Headings |
Data Processing - Parkinson's disease, state registry, patient data, automated reporting methods Physicians and Practitioners - Parkinson's disease, state registry, patient data, reporting requirement, removal Reports Mandated - Kentucky Parkinson's Disease Research Registry, yearly summary update, October 1, 2027 Advisory Boards, Commissions, and Committees - Kentucky Parkinson's Disease Research Registry Advisory Committee, membership |
| Amendment | House Committee Substitute 1 |
|---|---|
| Summary | Retain original provisions; define terms; create a new section of KRS Chapter 311A to permit a skilled nursing facility, hospital, or prescribed pediatric extended care center that operates a nonemergency medical transportation service to transport residents, including transportation via a stretcher, after providing the contracted transportation broker with the opportunity to provide the transportation; prohibit Medicaid reimbursement for the transportation service provided; permit a skilled nursing facility, hospital, or prescribed pediatric extended care center to become a contracted provider. |
| Index Headings |
Advisory Boards, Commissions, and Committees - Kentucky Parkinson's Disease Research Registry Advisory Committee, membership Data Processing - Parkinson's disease, state registry, patient data, automated reporting methods Emergency Medical Services - Transportation, nonemergency, health facility, allowance Health and Medical Services - Transportation, nonemergency, health facility, allowance Hospitals and Nursing Homes - Transportation, nonemergency, health facility, allowance Physicians and Practitioners - Parkinson's disease, state registry, patient data, reporting requirement, removal Public Medical Assistance - Transportation, nonemergency, reimbursement, prohibition Medicaid - Transportation, nonemergency, reimbursement, prohibition Reports Mandated - Kentucky Parkinson's Disease Research Registry, yearly summary update, October 1, 2027 |
| Amendment | House Committee Amendment 1 |
|---|---|
| Sponsor | K. Moser |
| Summary | Make title amendment. |
| Index Headings | Title Amendments - SB 27/GA |
| Amendment | House Floor Amendment 1 |
|---|---|
| Sponsor | S. Bratcher |
| Summary | Delete provisions related to nonemergency medical transportation provided by a prescribed pediatric extended care center. |
| Index Headings |
Data Processing - Parkinson's disease, state registry, patient data, automated reporting methods Emergency Medical Services - Transportation, nonemergency, health facility, allowance Health and Medical Services - Transportation, nonemergency, health facility, allowance Hospitals and Nursing Homes - Transportation, nonemergency, health facility, allowance Physicians and Practitioners - Parkinson's disease, state registry, patient data, reporting requirement, removal Public Medical Assistance - Transportation, nonemergency, reimbursement, prohibition Medicaid - Transportation, nonemergency, reimbursement, prohibition Advisory Boards, Commissions, and Committees - Kentucky Parkinson's Disease Research Registry Advisory Committee, membership |
Last updated: 3/13/2025 11:37 PM (EDT)