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.
Summary
Bill S06413 aims to establish a state registry for amyotrophic lateral sclerosis (ALS) and motor neuron disease (MND) in New York. The bill mandates that healthcare providers, including physicians and hospitals, report cases of ALS and MND to the Department of Health within 180 days of diagnosis. It also requires that patients be informed about the data collection process and provides them with the option to opt out of participation while still ensuring their cases are recorded in the registry. The Department of Health will be responsible for maintaining the registry and ensuring the confidentiality of patient information.
Impact
The establishment of the ALS and MND registry will enhance the state's ability to track the incidence and prevalence of these diseases, potentially leading to better resource allocation and research opportunities. The bill amends the public health law to include specific duties for healthcare providers and the Department of Health, thereby formalizing the process of data collection and patient notification. This could improve public health responses and inform future healthcare policies related to ALS and MND.
Sentiment
The sentiment surrounding Bill S06413 appears to be overwhelmingly positive, as indicated by the unanimous votes in various committees and on the Senate floor. The discussions highlight a shared recognition of the importance of tracking ALS and MND cases to improve patient outcomes and public health initiatives.
Contention
There were no notable points of contention reported during the discussions or votes on Bill S06413. The support from all voting members suggests a consensus on the necessity of the registry and its potential benefits for patients and healthcare providers alike.
Same As
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.