A 1985: Establishes a state frontotemporal degeneration registry - New York

A1985B → A1985C · 5 edits

MODERATE

This bill was amended to add a new sponsor (Sayegh), reassign the bill to the Committee on Codes for review, and update several dates and definitions related to the frontotemporal degeneration registry. The most significant change is the shift from tracking 'incidence and prevalence' to specifically tracking 'rate of clinical diagnoses' for the registry website, and the deadline for creating the website was moved up by one year from 2028 to 2027.

Scope change

The bill's scope was slightly narrowed by changing the registry's reporting focus from general incidence/prevalence to specifically the rate of clinical diagnoses, and the timeline for launching the public website was accelerated.

ELIGIBILITY

A new sponsor, Sayegh, was added to the list of bill sponsors.

TIMELINE

The deadline for creating the public registry website was moved from January 1, 2028 to January 1, 2027.

REQUIREMENT

The registry website requirement was changed to report the 'rate of clinical diagnoses' instead of just 'incidence and prevalence' of FTD disorders.

DEFINITION

The section defining FTD disorders was renumbered and reorganized, though the substantive definition remained the same.

TECHNICAL

The bill was referred to the Committee on Codes in addition to the Committee on Health, and the bill number was updated from 1985-B to 1985-C.

A1985A → A1985B · 7 edits

MODERATE

This bill was amended to reorganize the new frontotemporal degeneration registry from a title within Article 2 to a separate new article (20-C) in the Public Health Law. The changes update section numbering, clarify reporting requirements for healthcare providers, and establish clearer timelines and confidentiality protections for patient data.

Scope change

The bill's scope remains focused on establishing a registry for frontotemporal degeneration disorders, but the organizational structure changed from a title within an existing article to a standalone article with renumbered sections.

TECHNICAL

Changed the bill's title from '1985-A' to '1985-B' and updated the legislative history to reflect that it was reported from committee with amendments.

Reorganized the bill structure by moving the registry from 'Title 9 of Article 2' to 'Article 20-C' with renumbered sections (269-a through 269-d became 2015 through 2019).

REQUIREMENT

Added explicit 180-day reporting deadline for physicians and healthcare providers to report FTD diagnoses to the department.

Added specific requirements for written and verbal notice to patients about data collection, with an opt-out mechanism for those who do not wish to participate.

Added requirement for the department to create a public website by January 1, 2028, to display registry statistics by county and demographic information.

Added explicit confidentiality provisions stating that patient identity information shall be protected and only shared in aggregate or statistical form.

Simplified the advisory committee structure from a 11-member committee with specific selection requirements to a more flexible approach allowing the department to consult with experts, patients, and researchers.

A1985 → A1985A · 4 edits

MODERATE

This bill amendment expands the definition of frontotemporal degeneration (FTD) disorders to include specific subtypes and adds motor control symptoms to the definition. It also updates the registry requirements to track clinical diagnoses of FTD disorders rather than just the disease itself, and clarifies the reporting requirements for patients who opt out of participation.

Scope change

The bill now explicitly includes behavioral variant FTD, primary progressive aphasia, corticobasal syndrome, and progressive supranuclear palsy under the FTD definition, and acknowledges that some FTD patients may also have ALS.

DEFINITION

Changed the definition of frontotemporal degeneration from a general term to 'frontotemporal degeneration disorders' or 'FTD disorders' with specific inclusion of behavioral variant FTD, primary progressive aphasia, corticobasal syndrome, and progressive supranuclear palsy.

Added language acknowledging that some individuals with FTD may also be diagnosed with ALS (amyotrophic lateral sclerosis).

REQUIREMENT

Updated the registry reporting requirements to track the rate of clinical diagnoses of FTD disorders rather than just incidence of frontotemporal degeneration.

Changed the advisory committee designation language from 'frontotemporal degeneration and related dementias' to 'FTD disorders'.

Establishes a state frontotemporal degeneration registry

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