Requires the department of health to establish a registry for the collection of information on the incidence and prevalence of amyotrophic lateral sclerosis (ALS) and motor neuron disease (MND) in the state; requires that every physician, nurse practitioner, physician assistant and general hospital that diagnoses or treats a patient diagnosed with ALS or MND give notice to the department of cases of ALS or MND coming under their care; requires that patients diagnosed with ALS or MND be provided with written and verbal notice regarding the collection of information and patient data on ALS and MND and provides a method for patients to opt out of the collection of data; provides for duties of the department and the commissioner of health in relation thereto.
A07845 would create a New York State registry for amyotrophic lateral sclerosis (ALS) and motor neuron disease (MND) within the Department of Health. The bill requires physicians, nurse practitioners, physician assistants, and general hospitals that diagnose or treat a patient with ALS or MND to report cases to the department within 180 days. It also requires patients to receive written and verbal notice about the registry and gives them the ability to opt out of data collection, while still allowing the registry to record the existence of the case.
The registry is intended to track the incidence and prevalence of ALS and MND statewide and to support public health and research efforts. The Department of Health would maintain the data confidentially, may share de-identified aggregate information with the CDC, local health officers, and qualified researchers, and must create a public website by January 1, 2027 showing county-level incidence, prevalence, and demographic information. The commissioner is authorized to adopt regulations governing reporting, permissible uses, and confidentiality protections.
The bill would amend the Public Health Law by adding a new article establishing mandatory reporting and data-collection requirements for ALS and MND cases. It would impose new reporting duties on health care providers and hospitals, create confidentiality and access rules for the Department of Health, and authorize the commissioner to issue implementing regulations. It would also require the state to maintain a public-facing registry website and could affect patients, clinicians, hospitals, public health officials, and researchers studying neurodegenerative disease.
The bill appears to have broad support in the Legislature. It advanced unanimously through the Assembly Health, Codes, Ways and Means, and Rules committees, then passed both the Assembly and Senate floor votes without any opposition. The voting history suggests a generally favorable view of the measure as a public health and research tool.
There is little evidence of substantive opposition in the available record, but the bill does include privacy-related safeguards that likely address the main area of concern. The opt-out notice requirement, confidentiality provisions, limits on disclosure, and de-identification rules suggest sensitivity to patient privacy and data use. Any potential contention would likely center on mandatory provider reporting, patient consent, and how much information should be made publicly available through the registry website.