CA AB 424: ALS/Neurodegenerative Disease Registry

A recent study revealed that the prevalence of ALS is expected to grow by 69% by 2040, yet there is still a severe lack of information and research on the disease, including its incidence numbers, pre-existing factors, and even a proper diagnosis methodology. Currently, in order to receive a diagnosis of ALS, patients go through a long and complicated process of elimination, and there currently are no reporting requirements, making it harder to ensure that people with ALS are offered adequate support and care.

Existing law requires the California Department of Public Health (CDPH) to collect and establish a registry for Parkinson’s Disease and, at the department’s discretion, other known and prevalent neurodegenerative diseases. While CDPH established its Parkinson’s registry in 2018, it has been slow to expand its efforts to other neurodegenerative diseases, including ALS. The Parkinson’s registry utilizes the same data collection model as existing state cancer registries, which allows physicians to log a new diagnosis through the electronic medical records system. 75% of physicians in the state already use this electronic record-keeping system, which also allows for easy reporting of important public health information.

The California Legislature created a Neurodegenerative Disease Registry as part of the 2021-22 State Budget and recognized ALS as eligible to be included. The signing of AB 424 now makes certain the CDPH prioritizes ALS so that researchers can better understand the demographics of the ALS community. This ALS registry will enable the state to better identify where people who are diagnosed with ALS live to ensure that they are connected to the resources they need. It will also support the acceleration of research into the causes of ALS and the discovery of effective treatments and cures. An ALS registry is an important tool for enabling a deeper understanding of the patient population which can be used to inform clinical trial enrollment and improve engagement and participation of the ALS patient community in research opportunities.

Section 103871 of the Health and Safety Code was amended to include:

“The department shall establish a system for the collection of information determining the incidence and prevalence of neurodegenerative diseases, including, but not limited to, amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease. The department shall designate the specified neurodegenerative diseases as a disease required to be reported in the state or any part of the state. All cases of neurodegenerative disease diagnosed or treated in California shall be reported to the department.

“The department shall provide notification of the mandatory reporting of neurodegenerative disease on its internet website and shall also provide that information to associations representing physicians and hospitals and directly to the Medical Board of California at least 90 days prior to requiring information be reported.

“A hospital, facility, physician and surgeon, or other health care provider diagnosing or providing treatment for a patient with a neurodegenerative disease shall report each case of a neurodegenerative disease to the department in a format prescribed by the department.

“Except as otherwise provided in this chapter, all information collected pursuant to this section shall be confidential. For purposes of this chapter, this information shall be referred to as “confidential information.”

We are grateful to our legislators and passionate ALS advocates who collaborate at all levels - state, local, and federal - to improve awareness and resources for people affected by ALS. This is ALS advocacy in action!