TRENTON – The Senate passed legislation sponsored by Senators Vin Gopal and Troy Singleton that would strengthen public health surveillance of amyotrophic lateral sclerosis (ALS) and other motor neuron diseases by requiring confidential reporting of diagnosed cases to the New Jersey State Health Assessment Data System.

ALS, also known as Lou Gehrig’s disease, is a rare and progressive neurodegenerative condition that affects nerve cells responsible for voluntary muscle movement. There is currently no cure. The ALS Association estimates that more than 800 New Jersey residents are living with ALS, though experts believe the disease is underreported due to voluntary reporting systems.

The bill, S-4030, would require health care professionals who screen for, diagnose, or provide therapeutic services to patients with ALS or motor neuron disease to confidentially report cases within six months of diagnosis, consistent with state and federal privacy protections. The data would be used exclusively for public health monitoring, research, and statistical purposes, while ensuring the confidentiality of patients and providers.

“ALS is a devastating disease that impacts families across New Jersey, yet we still lack complete and reliable data on how many people are affected and where support is most needed,” said Senator Gopal (D-Monmouth). “By improving reporting and data collection, this legislation helps ensure that public health officials and researchers have the information necessary to understand ALS better and improve care, resources, and outcomes for patients.”

“Accurate data is essential to advancing research and delivering meaningful support to individuals living with ALS and other motor neuron diseases,” said Senator Singleton (D-Burlington). “This bill modernizes our approach while maintaining strict privacy protections, allowing New Jersey to contribute valuable information to broader research efforts and public health planning.”

Under the bill, the Department of Health would oversee reporting to the New Jersey State Health Assessment Data System. The Department of Health would be permitted to share de-identified data with the Centers for Disease Control and Prevention, local health officials, or qualified researchers for public health and research purposes. Any shared data would be limited to the minimum necessary to support approved research, with no personal identifying information included. The de-identified datasets would also be available on the DOH website within one year of the bill’s enactment.

The bill passed in a 38-0 vote.

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