Bill Text: NY A01985 | 2025-2026 | General Assembly | Introduced
Bill Title: Establishes a state frontotemporal degeneration registry; designates frontotemporal degeneration and related dementias as diseases required to be reported in the state; establishes a frontotemporal degeneration registry advisory committee to assist in the development and implementation of the registry; allows a patient to opt out of participation in the registry; requires annual reports to the legislature and governor on the incidents and prevalence of frontotemporal degeneration in the state by county; requires the department of health to create and maintain a webpage.
Spectrum: Moderate Partisan Bill (Democrat 4-1)
Status: (Introduced) 2025-01-14 - referred to health [A01985 Detail]
Download: New_York-2025-A01985-Introduced.html
STATE OF NEW YORK ________________________________________________________________________ 1985 2025-2026 Regular Sessions IN ASSEMBLY January 14, 2025 ___________ Introduced by M. of A. PAULIN, DE LOS SANTOS, BEEPHAN, BORES, EPSTEIN -- read once and referred to the Committee on Health AN ACT to amend the public health law, in relation to establishing a state frontotemporal degeneration registry The People of the State of New York, represented in Senate and Assem- bly, do enact as follows: 1 Section 1. Article 2 of the public health law is amended by adding a 2 new title 9 to read as follows: 3 TITLE IX 4 STATE FRONTOTEMPORAL DEGENERATION 5 REGISTRY 6 Section 269-a. Definitions. 7 269-b. Registry established. 8 269-c. Reports. 9 269-d. New York state frontotemporal degeneration research 10 registry website. 11 § 269-a. Definitions. For the purposes of this title: 12 1. "Frontotemporal degeneration" means a group of disorders caused by 13 progressive nerve cell loss in the brain's frontal lobes or its temporal 14 lobes which can lead to loss of function in these brain regions, which 15 variably cause deterioration in behavior, personality and/or difficulty 16 with producing or comprehending language. For the purposes of this 17 title frontotemporal degeneration is the same as "FTD". 18 2. "Dementia" means a usually progressive condition marked by the 19 development of multiple cognitive deficits, which may include but is not 20 exclusive to memory impairment, aphasia, and the inability to plan and 21 initiate complex behavior. Dementia includes but is not limited to FTD, 22 Alzheimer's disease, Lewy Body Dementia and Vascular Dementia. 23 § 269-b. Registry established. 1. The department, in conjunction with 24 the state office for the aging, shall collect data on the incidence of 25 frontotemporal degeneration in this state and other epidemiological EXPLANATION--Matter in italics (underscored) is new; matter in brackets [] is old law to be omitted. LBD02004-01-5A. 1985 2 1 data. The registry and system of collection and dissemination of infor- 2 mation shall be under the direction of the commissioner, who may enter 3 into contracts, grants or other agreements as are necessary for the 4 conduct of the registry. 5 2. (a) The department shall, within ninety days of the effective date 6 of this section, establish a frontotemporal degeneration registry advi- 7 sory committee to assist in the development and implementation of the 8 registry; determine what data shall be collected, in addition to the 9 data required by section two hundred sixty-nine-c of this title for 10 annual reports; and generally, advise the department. Following the 11 completion of the registry, the advisory committee shall assist the 12 department with the creation and publication of the reports required by 13 section two hundred sixty-nine-c of this title. 14 (b) Members of the committee shall be selected by the governor, the 15 legislature and the commissioner. The governor, the temporary president 16 of the senate, the speaker of the assembly and the commissioner shall 17 each select two committee members and the minority leaders of the senate 18 and the assembly shall each select one committee member. Membership of 19 the committee shall include: 20 (i) a neurologist; 21 (ii) a speech pathologist; 22 (iii) a primary care provider; 23 (iv) a physician informaticist; 24 (v) a patient living with frontotemporal degeneration; 25 (vi) a caregiver of a patient living with frontotemporal degeneration; 26 (vii) a public health professional; 27 (viii) a population health researcher familiar with registries; 28 (ix) a frontotemporal degeneration researcher; 29 (x) a member of an organization that raises awareness about and 30 promotes research for the treatment of frontotemporal degeneration; and 31 (xi) anyone else the commissioner deems necessary. 32 3. (a) The department shall designate frontotemporal degeneration and 33 related dementias as advised by the advisory committee as dementias 34 required to be reported in the state or any part of the state. 35 (b) The department shall establish a system for the collection and 36 dissemination of information determining the incidence and prevalence of 37 frontotemporal degeneration and related dementias, as advised by the 38 advisory committee. 39 (c) All cases of frontotemporal degeneration diagnosed or treated in 40 this state shall be reported to the department, provided the mere inci- 41 dence of a patient with frontotemporal degeneration shall be the sole 42 required information for this registry for any patient who chooses not 43 to participate. For the subset of patients who choose not to partic- 44 ipate, no further data shall be reported to the registry. The department 45 may create, review and revise a list of data points required as part of 46 mandated frontotemporal degeneration reporting under this section. Such 47 list shall include, but not be limited to necessary triggering diagnos- 48 tic conditions, consistent with the latest International Statistical 49 Classification of Diseases and Related Health Problems, and resulting 50 case data including, but not limited to, diagnosis, treatment and 51 survival. The department may implement and administer this paragraph 52 through a bulletin, or similar instruction, to providers without taking 53 regulatory action. 54 (d) The department shall provide notification of the mandatory report- 55 ing of frontotemporal degeneration and other related dementias on its 56 website and may also provide that information to professional associ-A. 1985 3 1 ations representing physicians, nurse practitioners, and hospitals at 2 least ninety days prior to requiring information be reported. 3 (e) A hospital, facility, physician, surgeon, physician assistant and 4 nurse practitioners who diagnose or are treating a patient diagnosed 5 with frontotemporal degeneration or other dementias and have primary 6 responsibility for the treatment and care of the patient for frontotem- 7 poral degeneration or other dementias shall report each case of fronto- 8 temporal degeneration or other dementias to the department in a format 9 prescribed by the department. The department is authorized to enter 10 into data sharing contracts with data reporting entities and their asso- 11 ciated electronic medical record systems vendors to securely and confi- 12 dentially receive information related to frontotemporal degeneration 13 testing, diagnosis and treatment. 14 4. All patients diagnosed with frontotemporal degeneration or other 15 dementias, as advised by the advisory committee, shall be provided a 16 notice in writing and orally regarding the collection of information and 17 patient data on frontotemporal degeneration. Patients who do not wish to 18 participate in the collection of data for purposes of research in this 19 registry shall affirmatively opt-out in writing after an opportunity to 20 review the documents and ask questions. The patient's caregiver may 21 opt-out on the patient's behalf, if the patient is unable to do so of 22 their own accord. No patient shall be required to participate in this 23 registry. 24 5. The department may enter into agreements to furnish data collected 25 in this registry to other states' frontotemporal degeneration regis- 26 tries, federal frontotemporal degeneration control agencies, local 27 health officers, or health researchers for the study of frontotemporal 28 degeneration. Before confidential information is disclosed to those 29 agencies, officers, researchers, or out-of-state registries, the 30 requesting entity shall agree in writing to maintain the confidentiality 31 of the information, and in the case of researchers, shall also do both 32 of the following: 33 (a) obtain approval of their committee for the protection of human 34 subjects established in accordance with Part 46 (commencing with Section 35 46.101) of Title 45 of the Code of Federal Regulations; and 36 (b) provide documentation to the department that demonstrates to the 37 department's satisfaction that the entity has established the procedures 38 and ability to maintain the confidentiality of the information. 39 6. Except as otherwise provided in this section, all information 40 collected pursuant to this section shall be confidential. For purposes 41 of this section, this information shall be referred to as confidential 42 information. To ensure privacy, the department shall promulgate a coding 43 system that removes any identifying information about the patient. 44 7. (a) Notwithstanding any other law, a disclosure authorized by this 45 section shall include only the information necessary for the stated 46 purpose of the requested disclosure, used for the approved purpose, and 47 not be further disclosed. 48 (b) Provided the security of confidentiality has been documented, the 49 furnishing of confidential information to the department or its author- 50 ized representative in accordance with this section shall not expose any 51 person, agency or entity furnishing information to liability, and shall 52 not be considered a waiver of any privilege or a violation of a confi- 53 dential relationship. 54 (c) The department shall maintain an accurate record of all persons 55 who are given access to confidential information. The record shall 56 include: the name of the person authorizing access; name, title,A. 1985 4 1 address, and organizational affiliation of persons given access; dates 2 of access; and the specific purpose for which information is to be used. 3 The record of access shall be open to public inspection during normal 4 operating hours of the department. 5 (d) Notwithstanding any other law, confidential information shall not 6 be available for subpoena, shall not be disclosed, discoverable or 7 compelled to be produced in any civil, criminal, administrative or other 8 proceeding. Confidential information shall not be deemed admissible as 9 evidence in any civil, criminal, administrative or other tribunal or 10 court for any reason. 11 (e) This subdivision does not prohibit the publication by the depart- 12 ment of reports and statistical compilations that do not in any way 13 identify individual cases or individual sources of information. 14 (f) Notwithstanding the restrictions in this subdivision, the individ- 15 ual to whom the information pertains shall have access to such individ- 16 ual's own information. 17 8. This section does not preempt the authority of facilities or indi- 18 viduals providing diagnostic or treatment services to patients with 19 frontotemporal degeneration to maintain their own facility-based fronto- 20 temporal degeneration registries. 21 § 269-c. Reports. 1. On or before January first, two thousand twen- 22 ty-seven, and every year thereafter, the department, in conjunction with 23 the advisory committee, shall report to the legislature and governor a 24 yearly program summary update on the incidence and prevalence of fronto- 25 temporal degeneration in the state. Such report shall include: 26 (a) the incidence and prevalence of frontotemporal degeneration by 27 county; 28 (b) how many records have been included and reported into the regis- 29 try; 30 (c) demographic information such as patients by age, gender and race; 31 (d) the number of new diagnoses in the preceding year; 32 (e) a summary of advancements in the treatment and newly developed 33 treatments of frontotemporal degeneration; 34 (f) a list of resources for the families of patients diagnosed with 35 frontotemporal degeneration and other dementias, which shall include but 36 not be limited to support from the state or federal government, support 37 groups and helplines; 38 (g) the resources available for the care of patients with frontotempo- 39 ral degeneration by region; 40 (h) the average yearly cost of care for a patient with frontotemporal 41 degeneration; and 42 (i) the number of patients with frontotemporal degeneration who had 43 previously received an incorrect diagnosis for their frontotemporal 44 degeneration related symptoms and the amount of time it took to receive 45 the correct diagnosis. 46 2. The yearly report shall be published in a downloadable format on 47 the department's website and the designated New York state frontotempo- 48 ral degeneration research registry website. 49 § 269-d. New York state frontotemporal degeneration research registry 50 website. On or before January first, two thousand twenty-seven, the 51 department shall create and maintain a webpage called the "New York 52 State Frontotemporal Degeneration Research Registry" where the public 53 may view information related to the registry, a yearly program summary, 54 the information required to be included in the yearly reports pursuant 55 to section two hundred sixty-nine-c of this title, and any other rele-A. 1985 5 1 vant or helpful information related to the registry as deemed necessary 2 by the advisory council. 3 § 2. This act shall take effect on the thirtieth day after it shall 4 have become a law.
