Bill > A2980

This bill requires health care professionals to confidentially report cases of amyotrophic lateral sclerosis (ALS) and motor neuron disease (MND) to the New Jersey State Health Assessment Data System. The bill defines ALS as a progressive neurodegenerative disease affecting nerve cells in the brain and spinal cord, and motor neuron disease as a group of neurological conditions that destroy motor neurons, which control muscle activities like walking and breathing. Health care professionals must report confirmed cases within six months of diagnosis, with strict protections to maintain patient and professional confidentiality. The department may share the data with federal agencies, local health officers, and researchers studying ALS and MND, but only in a manner that prevents disclosure of personal identifying information. The bill mandates that the Department of Health develop and publish educational materials about the data system, including how to access datasets and statistics related to ALS and MND. Additionally, the Department of Health, in consultation with the Public Health Council, will develop necessary rules and regulations to implement the act. The primary goal is to gather comprehensive data for research and statistical purposes while ensuring privacy and protecting sensitive personal information.

Health and Social Services

https://www.njleg.state.nj.us/bill-search/2024/A2980