STATE OF NEW YORK ________________________________________________________________________ 1985--A 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 -- committee discharged, bill amended, ordered reprinted as amended and recommitted to said committee 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 registry 10 website. 11 § 269-a. Definitions. For the purposes of this title: 12 1. "Frontotemporal degeneration disorders" or "FTD disorders" means a 13 group of clinical disorders caused by progressive nerve cell loss in the 14 brain's frontal lobes and/or temporal lobes which can lead to loss of 15 function in these brain regions, which variably cause deterioration in 16 behavior, personality and/or difficulty with producing or comprehending 17 language, as well as loss of motor control and movement. For the 18 purposes of this title frontotemporal degeneration disorders is the same 19 as "FTD" and includes, but is not limited to behavioral variant FTD, 20 primary progressive aphasia, corticobasal syndrome, and progressive 21 supranuclear palsy. Some individuals with FTD may also be diagnosed with 22 ALS. EXPLANATION--Matter in italics (underscored) is new; matter in brackets [ ] is old law to be omitted. LBD02004-03-5
A. 1985--A 2 1 2. "Dementia" means a usually progressive condition marked by the 2 development of multiple cognitive deficits, which may include but is not 3 exclusive to memory impairment, aphasia, and the inability to plan and 4 initiate complex behavior. Dementia has numerous different causes 5 including but not limited to FTD, Alzheimer's disease, Lewy Body Demen- 6 tia and Vascular Dementia. 7 § 269-b. Registry established. 1. The department, in conjunction with 8 the state office for the aging, shall collect data on the incidence of 9 FTD disorders in this state and other epidemiological data. The registry 10 and system of collection and dissemination of information shall be under 11 the direction of the commissioner, who may enter into contracts, grants 12 or other agreements as are necessary for the conduct of the registry. 13 2. (a) The department shall, within ninety days of the effective date 14 of this section, establish a frontotemporal degeneration registry advi- 15 sory committee to assist in the development and implementation of the 16 registry; determine what data shall be collected, in addition to the 17 data required by section two hundred sixty-nine-c of this title for 18 annual reports; and generally, advise the department. Following the 19 completion of the registry, the advisory committee shall assist the 20 department with the creation and publication of the reports required by 21 section two hundred sixty-nine-c of this title. 22 (b) Members of the committee shall be selected by the governor, the 23 legislature and the commissioner. The governor, the temporary president 24 of the senate, the speaker of the assembly and the commissioner shall 25 each select two committee members and the minority leaders of the senate 26 and the assembly shall each select one committee member. Membership of 27 the committee shall include: 28 (i) a neurologist; 29 (ii) a speech pathologist; 30 (iii) a primary care provider; 31 (iv) a physician informaticist; 32 (v) a patient living with frontotemporal degeneration; 33 (vi) a caregiver of a patient living with frontotemporal degeneration; 34 (vii) a public health professional; 35 (viii) a population health researcher familiar with registries; 36 (ix) a frontotemporal degeneration researcher; 37 (x) a member of an organization that raises awareness about and 38 promotes research for the treatment of frontotemporal degeneration; and 39 (xi) anyone else the commissioner deems necessary. 40 3. (a) The department shall designate FTD disorders as advised by the 41 advisory committee as a clinical diagnoses required to be reported in 42 the state or any part of the state. 43 (b) The department shall establish a system for the collection and 44 dissemination of information determining the rate of clinical diagnoses 45 of FTD disorders, as advised by the advisory committee. 46 (c) All cases of frontotemporal degeneration diagnosed or treated in 47 this state shall be reported to the department, provided the mere inci- 48 dence of a patient with frontotemporal degeneration shall be the sole 49 required information for this registry for any patient who chooses not 50 to participate. For the subset of patients who choose not to partic- 51 ipate, no further data shall be reported to the registry. The department 52 may create, review and revise a list of data points required as part of 53 mandated frontotemporal degeneration reporting under this section. Such 54 list shall include, but not be limited to necessary triggering diagnos- 55 tic conditions, consistent with the latest International Statistical 56 Classification of Diseases and Related Health Problems, and resulting
A. 1985--A 3 1 case data including, but not limited to, diagnosis, treatment and 2 survival. The department may implement and administer this paragraph 3 through a bulletin, or similar instruction, to providers without taking 4 regulatory action. 5 (d) The department shall provide notification of the mandatory report- 6 ing of FTD disorders on its website and may also provide that informa- 7 tion to professional associations representing physicians, nurse practi- 8 tioners, and hospitals at least ninety days prior to requiring 9 information be reported. 10 (e) A hospital, facility, physician, surgeon, physician assistant and 11 nurse practitioners who diagnose or are treating a patient diagnosed 12 with an FTD disorder and have primary responsibility for the treatment 13 and care of the patient for an FTD disorder shall report each case of an 14 FTD disorder to the department in a format prescribed by the department. 15 The department is authorized to enter into data sharing contracts with 16 data reporting entities and their associated electronic medical record 17 systems vendors to securely and confidentially receive information 18 related to frontotemporal degeneration testing, diagnosis and treatment. 19 4. All patients diagnosed with an FTD disorder, as advised by the 20 advisory committee, shall be provided a notice in writing and orally 21 regarding the collection of information and patient data on frontotempo- 22 ral degeneration. Patients who do not wish to participate in the 23 collection of data for purposes of research in this registry shall 24 affirmatively opt-out in writing after an opportunity to review the 25 documents and ask questions. The patient's caregiver may opt-out on the 26 patient's behalf, if the patient is unable to do so of their own accord. 27 No patient shall be required to participate in this registry. 28 5. The department may enter into agreements to furnish data collected 29 in this registry to other states' frontotemporal degeneration regis- 30 tries, federal frontotemporal degeneration control agencies, local 31 health officers, or health researchers for the study of frontotemporal 32 degeneration. Before confidential information is disclosed to those 33 agencies, officers, researchers, or out-of-state registries, the 34 requesting entity shall agree in writing to maintain the confidentiality 35 of the information, and in the case of researchers, shall also do both 36 of the following: 37 (a) obtain approval of their committee for the protection of human 38 subjects established in accordance with Part 46 (commencing with Section 39 46.101) of Title 45 of the Code of Federal Regulations; and 40 (b) provide documentation to the department that demonstrates to the 41 department's satisfaction that the entity has established the procedures 42 and ability to maintain the confidentiality of the information. 43 6. Except as otherwise provided in this section, all information 44 collected pursuant to this section shall be confidential. For purposes 45 of this section, this information shall be referred to as confidential 46 information. To ensure privacy, the department shall promulgate a coding 47 system that removes any identifying information about the patient. 48 7. (a) Notwithstanding any other law, a disclosure authorized by this 49 section shall include only the information necessary for the stated 50 purpose of the requested disclosure, used for the approved purpose, and 51 not be further disclosed. 52 (b) Provided the security of confidentiality has been documented, the 53 furnishing of confidential information to the department or its author- 54 ized representative in accordance with this section shall not expose any 55 person, agency or entity furnishing information to liability, and shall
A. 1985--A 4 1 not be considered a waiver of any privilege or a violation of a confi- 2 dential relationship. 3 (c) The department shall maintain an accurate record of all persons 4 who are given access to confidential information. The record shall 5 include: the name of the person authorizing access; name, title, 6 address, and organizational affiliation of persons given access; dates 7 of access; and the specific purpose for which information is to be used. 8 The record of access shall be open to public inspection during normal 9 operating hours of the department. 10 (d) Notwithstanding any other law, confidential information shall not 11 be available for subpoena, shall not be disclosed, discoverable or 12 compelled to be produced in any civil, criminal, administrative or other 13 proceeding. Confidential information shall not be deemed admissible as 14 evidence in any civil, criminal, administrative or other tribunal or 15 court for any reason. 16 (e) This subdivision does not prohibit the publication by the depart- 17 ment of reports and statistical compilations that do not in any way 18 identify individual cases or individual sources of information. 19 (f) Notwithstanding the restrictions in this subdivision, the individ- 20 ual to whom the information pertains shall have access to such individ- 21 ual's own information. 22 8. This section does not preempt the authority of facilities or indi- 23 viduals providing diagnostic or treatment services to patients with 24 frontotemporal degeneration to maintain their own facility-based fronto- 25 temporal degeneration registries. 26 § 269-c. Reports. 1. On or before January first, two thousand twen- 27 ty-seven, and every year thereafter, the department, in conjunction with 28 the advisory committee, shall report to the legislature and governor a 29 yearly program summary update on the rate of clinical diagnoses of FTD 30 disorders in the state. Such report shall include: 31 (a) the incidence and prevalence of frontotemporal degeneration by 32 county; 33 (b) how many records have been included and reported into the regis- 34 try; 35 (c) demographic information such as patients by age, gender and race; 36 (d) the number of new diagnoses in the preceding year; 37 (e) a summary of advancements in the treatment and newly developed 38 treatments of frontotemporal degeneration; 39 (f) a list of resources for the families of patients diagnosed with an 40 FTD disorder, which shall include but not be limited to support from the 41 state or federal government, support groups and helplines; 42 (g) the resources available for the care of patients with frontotempo- 43 ral degeneration by region; 44 (h) information related to the cost of care for patients who have been 45 diagnosed with an FTD disorder; and 46 (i) the number of patients diagnosed with an FTD disorder who had 47 previously received an incorrect diagnosis for their frontotemporal 48 degeneration related symptoms and the amount of time it took to receive 49 the FTD disorder diagnosis. 50 2. The yearly report shall be published in a downloadable format on 51 the department's website and the designated New York state frontotempo- 52 ral degeneration registry website. 53 § 269-d. New York state frontotemporal degeneration registry website. 54 On or before January first, two thousand twenty-seven, the department 55 shall create and maintain a webpage called the "New York State Fronto- 56 temporal Degeneration Registry" where the public may view information
A. 1985--A 5 1 related to the registry, a yearly program summary, the information 2 required to be included in the yearly reports pursuant to section two 3 hundred sixty-nine-c of this title, and any other relevant or helpful 4 information related to the registry as deemed necessary by the advisory 5 council. 6 § 2. This act shall take effect on the thirtieth day after it shall 7 have become a law.