Existing law, until January 1, 2028, and to the extent funds are made available for these purposes, requires the State Department of Public Health to 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 Gehrigs disease. Existing law requires a hospital, facility, physician and surgeon, or other health care provider diagnosing or providing treatment to a patient for a neurodegenerative disease to report each case of a neurodegenerative disease to the department, as prescribed. Existing law requires the department to designate the specified neurodegenerative diseases required to be reported in the state or any part of the state. Existing law specifies that for this purpose, neurodegenerative disease may include, but need not be limited to, Alzheimers disease, multiple sclerosis, and Huntingtons disease.

This bill would require the department to establish a system for the collection of information determining the incidence and prevalence of frontotemporal degeneration (FTD). This bill would specify that neurodegenerative disease may also include other dementias. The bill would extend the requirements of these provisions until January 1, 2032.

Existing law, until January 1, 2028, and to the extent funds are made available for these purposes, requires the State Department of Public Health to 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 Gehrigs disease. Existing law requires a hospital, facility, physician and surgeon, or other health care provider diagnosing or providing treatment to a patient for a neurodegenerative disease to report each case of a neurodegenerative disease to the department, as prescribed. Existing law requires the department to designate the specified neurodegenerative diseases required to be reported in the state or any part of the state. Existing law specifies that for this purpose, neurodegenerative disease may include, but need not be limited to, Alzheimers disease, multiple sclerosis, and Huntingtons disease.

This bill would require the department to establish a system for the collection of information determining the incidence and prevalence of frontotemporal degeneration (FTD). This bill would specify that neurodegenerative disease may also include other dementias. The bill would extend the requirements of these provisions until January 1, 2032.

Existing law, until January 1, 2028, and to the extent funds are made available for these purposes, requires the State Department of Public Health to 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 Gehrigs disease. Existing law requires a hospital, facility, physician and surgeon, or other health care provider diagnosing or providing treatment to a patient for a neurodegenerative disease to report each case of a neurodegenerative disease to the department, as prescribed. Existing law requires the department to designate the specified neurodegenerative diseases required to be reported in the state or any part of the state. Existing law specifies that for this purpose, neurodegenerative disease may include, but need not be limited to, Alzheimers disease, multiple sclerosis, and Huntingtons disease.

This bill would require the department to establish a system for the collection of information determining the incidence and prevalence of frontotemporal degeneration (FTD). This bill would specify that neurodegenerative disease may also include other dementias. The bill would extend the requirements of these provisions until January 1, 2032.

Existing law, until January 1, 2028, and to the extent funds are made available for these purposes, requires the State Department of Public Health to 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 Gehrigs disease. Existing law requires a hospital, facility, physician and surgeon, or other health care provider diagnosing or providing treatment to a patient for a neurodegenerative disease to report each case of a neurodegenerative disease to the department, as prescribed. Existing law requires the department to designate the specified neurodegenerative diseases required to be reported in the state or any part of the state. Existing law specifies that for this purpose, neurodegenerative disease may include, but need not be limited to, Alzheimers disease, multiple sclerosis, and Huntingtons disease.

This bill would require the department to establish a system for the collection of information determining the incidence and prevalence of frontotemporal degeneration (FTD). This bill would specify that neurodegenerative disease may also include other dementias. The bill would extend the requirements of these provisions until January 1, 2032.

Existing law, until January 1, 2028, and to the extent funds are made available for these purposes, requires the State Department of Public Health to collect data on the incidence of neurodegenerative disease in California. 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 Gehrigs disease. Existing law requires a hospital, facility, physician and surgeon, or other health care provider diagnosing or providing treatment to a patient for a neurodegenerative disease to report each case of a neurodegenerative disease to the department, as prescribed. Existing law requires the department to designate the specified neurodegenerative diseases required to be reported in the state or any part of the state. Existing law specifies that for this purpose, neurodegenerative disease may include, but need not be limited to, amyotrophic lateral sclerosis (ALS), Alzheimers disease, multiple sclerosis, and Huntingtons disease.

This bill would require the department to establish a system for the collection of information determining the incidence and prevalence of frontotemporal degeneration (FTD). This bill would specify that neurodegenerative disease includes frontotemporal degeneration (FTD) and may also include other dementias. The bill would extend the requirements of these provisions until January 1, 2030. 2032.

Existing law, until January 1, 2028, and to the extent funds are made available for these purposes, requires the State Department of Public Health to collect data on the incidence of neurodegenerative disease in California. Existing law requires a hospital, facility, physician and surgeon, or other health care provider diagnosing or providing treatment to a patient for a neurodegenerative disease to report each case of a neurodegenerative disease to the department, as prescribed. Existing law requires the department to designate the specified neurodegenerative diseases required to be reported in the state or any part of the state. Existing law specifies that for this purpose, neurodegenerative disease may include, but need not be limited to, amyotrophic lateral sclerosis (ALS), Alzheimers disease, multiple sclerosis, and Huntingtons disease.

This bill would specify that neurodegenerative disease includes frontotemporal degeneration (FTD) and other dementias. The bill would extend the requirements of these provisions until January 1, 2030.

 UNFINISHED BUSINESS  

Bill No: SB 1047

Author: Niello (R) and Allen (D), et al.

Amended: 8/19/26

Vote: 21

SENATE HEALTH COMMITTEE: 11-0, 3/25/26

AYES: Weber Pierson, Valladares, Caballero, Durazo, Gonzalez, Grove, Menjivar, Padilla, Pérez, Rubio, Smallwood-Cuevas

SENATE APPROPRIATIONS COMMITTEE: 7-0, 5/14/26

AYES: Cervantes, Seyarto, Cabaldon, Dahle, Grayson, Richardson, Wahab

SENATE FLOOR: 39-0, 5/28/26

AYES: Allen, Alvarado-Gil, Archuleta, Arreguín, Ashby, Becker, Blakespear, Cabaldon, Caballero, Cervantes, Choi, Cortese, Durazo, Gonzalez, Grayson, Grove, Hurtado, Jones, Laird, Limón, McGuire, McNerney, Menjivar, Niello, Ochoa Bogh, Padilla, Pérez, Reyes, Richardson, Rubio, Seyarto, Smallwood-Cuevas, Stern, Strickland, Umberg, Valladares, Wahab, Weber Pierson, Wiener

NO VOTE RECORDED: Dahle

ASSEMBLY FLOOR: 76-0, 8/24/26 - See last page for vote

SUBJECT: Neurodegenerative disease registry program

SOURCE: Association for Frontotemporal Degeneration

End Chronic Disease, INC.

DIGEST:

This bill (1) expands data collection and reporting requirements for the California Neurodegenerative Disease Registry Program (CNDRP) to include frontotemporal degeneration; (2) extends the CNDRP to January 1, 2032.

Assembly Amendments

make grammatical changes.

ANALYSIS:

Existing law:

1. Requires the California Department of Public Health (CDPH), under the CNDRP and until January 1, 2028, to collect data on the incidence and prevalence of neurodegenerative disease in California, including, but not limited to, amyotrophic lateral sclerosis (ALS). [Health and Safety Code (HSC) §103871 and §103871.2]
2. Allows CDPH to designate which neurodegenerative diseases must be reported and to prescribe the data collection method and data format. [HSC §103871]
3. Requires a hospital, facility, physician, or other health care provider diagnosing or treating a patient with a neurodegenerative disease to report all cases diagnosed or treated in the state to CDPH. [HSC §103871]
4. Specifies that neurodegenerative disease may include but is not limited to Alzheimer’s disease, multiple sclerosis, and Huntington’s disease. [HSC §103871]

This bill:

1. Expands data collection and reporting requirements for the CNDRP to include frontotemporal degeneration (FTD).
2. Extends the sunset date of the CNDRP to January 1, 2032.

Background

CNDRP. The CNDRP, within CDPH’s Chronic Disease Surveillance and Research Branch, was established in 2021 to collect data on the incidence of neurodegenerative disease in the state to better understand its prevalence among different populations and changes over time. The CNDRP has authority to determine which diseases must be reported. Statute requires that ALS cases be reported, and CDPH separately requires reporting for Alzheimer’s disease and multiple sclerosis. According to the CNDRP, the program began collecting data on multiple sclerosis on July 1, 2023, and has expanded reporting requirements to include Alzheimer’s in July of 2025 and ALS in July of 2026. Parkinson’s disease is reported via the Richard Paul Hemann California Parkinson’s Disease Registry, a similar program that predates the CNDRP.

CNDRP data are obtained from patients’ medical records and include their identifying information, demographic data, patient visit information, primary physician information, primary ICD-10 diagnosis code, and disease onset information. CDPH accepts data from registered providers through either manual data entry into a secure web portal or the automated electronic transfer of case files from electronic medical record systems. The data collected by CNDRP are confidential, meaning that detailed data may only be disclosed to researchers who have obtained approval from their institutional review board and have demonstrated their ability to maintain data security, other state neurodegenerative disease registries, federal neurodegenerative disease control agencies, and local health officers. The data can only be used for the stated purpose of their request. Patients and those legally authorized to obtain a patient’s confidential information can also access their data.

FTD. According to the National Institute of Neurological Disorders and Stroke, FTD (also known as frontotemporal dementia, frontotemporal disorder, frontotemporal lobar degeneration, or Pick’s disease) is caused by damage to neurons in the frontal and temporal lobes of the brain. Neuronal damage results in progressive atrophy of the lobes, disrupting the functions associated with these regions, such as planning and decision-making, emotional regulation, memory, and language. Depending on what area of the brain is affected, patients may also display difficulty with motor control. Because FTD is progressive, an individual’s symptoms will change over time as more parts of the brain are affected. FTD is diagnosed by neurological and cognitive exams and behavioral evaluations, family history and genetic testing, brain imaging, and laboratory tests that exclude the possibility of Alzheimer’s, but can only be confirmed postmortem.

FTD is usually diagnosed in three different categories: behavioral variant frontotemporal dementia (bvFTD); primary progressive aphasia (PPA); and movement disorders. Patients diagnosed with bvFTD display changes in personality, behavior, and judgment, with or without problems with cognition or memory. Those with PPA have difficulty with speaking, reading, writing, and understanding words. PPA patients often display cognitive symptoms of dementia as the disease progresses, and occasionally display behavioral changes as well. FTD-induced movement disorders include corticobasal syndrome, progressive supranuclear palsy, FTD with parkinsonism, and FTD-ALS. Corticobasal syndrome is characterized by difficulty using hands or arms, sometimes beginning on one side of the body before progressing to both. Those with progressive supranuclear palsy have difficulty walking, balancing, and moving facial muscles, and it is characterized by a fixed stare due to trouble with eye movements. Individuals with FTD with parkinsonism display symptoms similar to Parkinson’s disease, including slowed movement, stiffness, and balance issues. FTD-ALS is a combination of bvFTD and ALS, including ALS symptoms like progressive muscle weakness and muscle jerks or wiggling. The movement disorders may also include symptoms affecting behavior, thinking, and language. According to the Association for Frontotemporal Degeneration, an estimated 50,000-60,000 Americans have FTD. Unlike Alzheimer’s and many other dementias, FTD primarily affects middle-aged individuals. About 60% of diagnoses occur between 45 and 64 years of age, when many are still working and caring for family members. The life expectancy for those with FTD ranges from two to 20 years from the onset of symptoms.

Comments

According to the author of this bill:

This bill will direct the CNDRP to collect data on FTD and require hospitals and health care professionals to report cases. FTD is a terminal and incurable neurodegenerative disease, causing impairments to speech, personality, behavior, and movement, and constitutes a major public health concern. FTD represents an estimated 5-15% of dementia cases and is the most common form of dementia for people under 60. It is reported that 75% of physicians in California already use the necessary record-keeping system. This bill will help prioritize FTD so researchers can better identify and treat the FTD community, speeding research into the causes, treatments, and hopefully cures for FTD, as well as informing patients of clinical trials, a critical tool for those dealing with this disease. This bill also extends the sunset date to continue the work on behalf of other previously approved neurodegenerative diseases.

FISCAL EFFECT: Appropriation: No Fiscal Com.: Yes Local: No

According to the Assembly Appropriations Committee, CDPH estimates General Fund costs of approximately $2.7 million per year in fiscal years (FYs) 2027-28 through 2031-32 to implement provisions of this bill. CDPH states these costs include the following:

• Staff: 7.3 full-time equivalents (FTEs) to support programmatic functions, two FTEs for information technology support, and an additional FTE to incorporate FTD into data collection requirements. Staff serve as subject matter experts, perform data management system (DMS) activities and analysis, create datasets, conduct outreach, and provide technical assistance to data providers, associations, and partners to ensure data accuracy and to meet the statutory mandate.
  
• Information technology: $400,000 to support the CNDR DMS, including costs associated with the California Reportable Disease Information Exchange manual entry web portal, integration and data validation tool, associated software, and maintenance and operations of the DMS.
  
• Promulgating regulations: $63,000. 

SUPPORT: (Verified 8/24/26)

Association for Frontotemporal Degeneration (co-source)

End Chronic Disease, INC. (co-source)

ALS Association

ALS Network

Alzheimer’s Greater Los Angeles

Alzheimer’s Orange County

Alzheimer’s San Diego

Biocom California

Bluefield Project

California Life Sciences Association

Cure MAPT FTD

Cure GRN

Michael J. Fox Foundation for Parkinson’s Research

Eleven individuals

OPPOSITION: (Verified 8/24/26)

None received

ARGUMENTS IN SUPPORT: The co-sources of this bill, the Association for Frontotemporal Degeneration (AFTD) and End Chronic Disease, support the CNDRP, described as a vital and cost-effective resource for researchers. End Chronic Disease shares that disease registries are important medical research infrastructure, allowing researchers to recruit patients for clinical trials, evaluate treatment effectiveness, understand disease progression, and develop precision medicine approaches. They hope that expanded reporting for those with frontotemporal degeneration can help identify trends earlier, recognize clusters of disease, improve screening recommendations, and support earlier intervention. AFTD and a coalition of ALS, FTD, and Parkinson’s disease organizations write that it is their goal to ensure every person living with a neurodegenerative disease is seen, counted, and supported through data-informed public policy and research investment. The interconnectedness of many neurodegenerative diseases means improving data collection for one condition strengthens understanding across the field. Several supporters highlight that the explicit inclusion of FTD and other dementias within the definition of neurodegenerative disease reflects the current state of the science around the interconnectedness of neurodegenerative diseases and emphasize that comprehensive data collection will better inform research, care, resource allocation, and eventually, outcomes for patients. California Life Sciences writes that the existing registry infrastructure uses electronic medical records and established reporting mechanisms to collect data without creating unnecessary administrative burden.

ASSEMBLY FLOOR: 76-0, 8/24/26

AYES: Addis, Aguiar-Curry, Ahrens, Alanis, Alvarez, Arambula, Ávila Farías, Bains, Bauer-Kahan, Bennett, Berman, Boerner, Bonta, Bryan, Calderon, Caloza, Carrillo, Castillo, Chen, Connolly, Davies, DeMaio, Dixon, Elhawary, Ellis, Flora, Fong, Gabriel, Garcia, Gipson, Jeff Gonzalez, Mark González, Hadwick, Haney, Harabedian, Hart, Hoover, Irwin, Johnson, Kalra, Krell, Lackey, Lowenthal, Macedo, Muratsuchi, Nguyen, Ortega, Pacheco, Papan, Patel, Patterson, Pellerin, Petrie-Norris, Quirk-Silva, Ramos, Ransom, Celeste Rodriguez, Michelle Rodriguez, Rogers, Blanca Rubio, Sanchez, Schiavo, Schultz, Sharp-Collins, Solache, Soria, Stefani, Ta, Tangipa, Valencia, Wallis, Ward, Wicks, Wilson, Zbur, Rivas

NO VOTE RECORDED: Jackson, Lee, McKinnor

Prepared by: Natalie Gehred / HEALTH / (916) 651-4111

9/15/26 14:57:56

**** END ****

 UNFINISHED BUSINESS  

Bill No: SB 1047

Author: Niello (R) and Allen (D), et al.

Amended: 8/19/26

Vote: 21

SENATE HEALTH COMMITTEE: 11-0, 3/25/26

AYES: Weber Pierson, Valladares, Caballero, Durazo, Gonzalez, Grove, Menjivar, Padilla, Pérez, Rubio, Smallwood-Cuevas

SENATE APPROPRIATIONS COMMITTEE: 7-0, 5/14/26

AYES: Cervantes, Seyarto, Cabaldon, Dahle, Grayson, Richardson, Wahab

SENATE FLOOR: 39-0, 5/28/26

AYES: Allen, Alvarado-Gil, Archuleta, Arreguín, Ashby, Becker, Blakespear, Cabaldon, Caballero, Cervantes, Choi, Cortese, Durazo, Gonzalez, Grayson, Grove, Hurtado, Jones, Laird, Limón, McGuire, McNerney, Menjivar, Niello, Ochoa Bogh, Padilla, Pérez, Reyes, Richardson, Rubio, Seyarto, Smallwood-Cuevas, Stern, Strickland, Umberg, Valladares, Wahab, Weber Pierson, Wiener

NO VOTE RECORDED: Dahle

ASSEMBLY FLOOR: Passed, 8/24/26

SUBJECT: Neurodegenerative disease registry program

SOURCE: Association for Frontotemporal Degeneration

End Chronic Disease, INC.

DIGEST:

This bill (1) expands data collection and reporting requirements for the California Neurodegenerative Disease Registry Program (CNDRP) to include frontotemporal degeneration; (2) extends the CNDRP to January 1, 2032.

Assembly Amendments

make grammatical changes.

ANALYSIS:

Existing law:

1. Requires the California Department of Public Health (CDPH), under the CNDRP and until January 1, 2028, to collect data on the incidence and prevalence of neurodegenerative disease in California, including, but not limited to, amyotrophic lateral sclerosis (ALS). [Health and Safety Code (HSC) §103871 and §103871.2]
2. Allows CDPH to designate which neurodegenerative diseases must be reported and to prescribe the data collection method and data format. [HSC §103871]
3. Requires a hospital, facility, physician, or other health care provider diagnosing or treating a patient with a neurodegenerative disease to report all cases diagnosed or treated in the state to CDPH. [HSC §103871]
4. Specifies that neurodegenerative disease may include but is not limited to Alzheimer’s disease, multiple sclerosis, and Huntington’s disease. [HSC §103871]

This bill:

1. Expands data collection and reporting requirements for the CNDRP to include frontotemporal degeneration (FTD).
2. Extends the sunset date of the CNDRP to January 1, 2032.

Background

CNDRP. The CNDRP, within CDPH’s Chronic Disease Surveillance and Research Branch, was established in 2021 to collect data on the incidence of neurodegenerative disease in the state to better understand its prevalence among different populations and changes over time. The CNDRP has authority to determine which diseases must be reported. Statute requires that ALS cases be reported, and CDPH separately requires reporting for Alzheimer’s disease and multiple sclerosis. According to the CNDRP, the program began collecting data on multiple sclerosis on July 1, 2023, and has expanded reporting requirements to include Alzheimer’s in July of 2025 and ALS in July of 2026. Parkinson’s disease is reported via the Richard Paul Hemann California Parkinson’s Disease Registry, a similar program that predates the CNDRP.

CNDRP data are obtained from patients’ medical records and include their identifying information, demographic data, patient visit information, primary physician information, primary ICD-10 diagnosis code, and disease onset information. CDPH accepts data from registered providers through either manual data entry into a secure web portal or the automated electronic transfer of case files from electronic medical record systems. The data collected by CNDRP are confidential, meaning that detailed data may only be disclosed to researchers who have obtained approval from their institutional review board and have demonstrated their ability to maintain data security, other state neurodegenerative disease registries, federal neurodegenerative disease control agencies, and local health officers. The data can only be used for the stated purpose of their request. Patients and those legally authorized to obtain a patient’s confidential information can also access their data.

FTD. According to the National Institute of Neurological Disorders and Stroke, FTD (also known as frontotemporal dementia, frontotemporal disorder, frontotemporal lobar degeneration, or Pick’s disease) is caused by damage to neurons in the frontal and temporal lobes of the brain. Neuronal damage results in progressive atrophy of the lobes, disrupting the functions associated with these regions, such as planning and decision-making, emotional regulation, memory, and language. Depending on what area of the brain is affected, patients may also display difficulty with motor control. Because FTD is progressive, an individual’s symptoms will change over time as more parts of the brain are affected. FTD is diagnosed by neurological and cognitive exams and behavioral evaluations, family history and genetic testing, brain imaging, and laboratory tests that exclude the possibility of Alzheimer’s, but can only be confirmed postmortem.

FTD is usually diagnosed in three different categories: behavioral variant frontotemporal dementia (bvFTD); primary progressive aphasia (PPA); and movement disorders. Patients diagnosed with bvFTD display changes in personality, behavior, and judgment, with or without problems with cognition or memory. Those with PPA have difficulty with speaking, reading, writing, and understanding words. PPA patients often display cognitive symptoms of dementia as the disease progresses, and occasionally display behavioral changes as well. FTD-induced movement disorders include corticobasal syndrome, progressive supranuclear palsy, FTD with parkinsonism, and FTD-ALS. Corticobasal syndrome is characterized by difficulty using hands or arms, sometimes beginning on one side of the body before progressing to both. Those with progressive supranuclear palsy have difficulty walking, balancing, and moving facial muscles, and it is characterized by a fixed stare due to trouble with eye movements. Individuals with FTD with parkinsonism display symptoms similar to Parkinson’s disease, including slowed movement, stiffness, and balance issues. FTD-ALS is a combination of bvFTD and ALS, including ALS symptoms like progressive muscle weakness and muscle jerks or wiggling. The movement disorders may also include symptoms affecting behavior, thinking, and language. According to the Association for Frontotemporal Degeneration, an estimated 50,000-60,000 Americans have FTD. Unlike Alzheimer’s and many other dementias, FTD primarily affects middle-aged individuals. About 60% of diagnoses occur between 45 and 64 years of age, when many are still working and caring for family members. The life expectancy for those with FTD ranges from two to 20 years from the onset of symptoms.

Comments

According to the author of this bill:

This bill will direct the CNDRP to collect data on FTD and require hospitals and health care professionals to report cases. FTD is a terminal and incurable neurodegenerative disease, causing impairments to speech, personality, behavior, and movement, and constitutes a major public health concern. FTD represents an estimated 5-15% of dementia cases and is the most common form of dementia for people under 60. It is reported that 75% of physicians in California already use the necessary record-keeping system. This bill will help prioritize FTD so researchers can better identify and treat the FTD community, speeding research into the causes, treatments, and hopefully cures for FTD, as well as informing patients of clinical trials, a critical tool for those dealing with this disease. This bill also extends the sunset date to continue the work on behalf of other previously approved neurodegenerative diseases.

FISCAL EFFECT: Appropriation: No Fiscal Com.: Yes Local: No

According to the Assembly Appropriations Committee, CDPH estimates General Fund costs of approximately $2.7 million per year in fiscal years (FYs) 2027-28 through 2031-32 to implement provisions of this bill. CDPH states these costs include the following:

• Staff: 7.3 full-time equivalents (FTEs) to support programmatic functions, two FTEs for information technology support, and an additional FTE to incorporate FTD into data collection requirements. Staff serve as subject matter experts, perform data management system (DMS) activities and analysis, create datasets, conduct outreach, and provide technical assistance to data providers, associations, and partners to ensure data accuracy and to meet the statutory mandate.
  
• Information technology: $400,000 to support the CNDR DMS, including costs associated with the California Reportable Disease Information Exchange manual entry web portal, integration and data validation tool, associated software, and maintenance and operations of the DMS.
  
• Promulgating regulations: $63,000. 

SUPPORT: (Verified 8/24/26)

Association for Frontotemporal Degeneration (co-source)

End Chronic Disease, INC. (co-source)

ALS Association

ALS Network

Alzheimer’s Greater Los Angeles

Alzheimer’s Orange County

Alzheimer’s San Diego

Biocom California

Bluefield Project

California Life Sciences Association

Cure MAPT FTD

Cure GRN

Michael J. Fox Foundation for Parkinson’s Research

Eleven individuals

OPPOSITION: (Verified 8/24/26)

None received

ARGUMENTS IN SUPPORT: The co-sources of this bill, the Association for Frontotemporal Degeneration (AFTD) and End Chronic Disease, support the CNDRP, described as a vital and cost-effective resource for researchers. End Chronic Disease shares that disease registries are important medical research infrastructure, allowing researchers to recruit patients for clinical trials, evaluate treatment effectiveness, understand disease progression, and develop precision medicine approaches. They hope that expanded reporting for those with frontotemporal degeneration can help identify trends earlier, recognize clusters of disease, improve screening recommendations, and support earlier intervention. AFTD and a coalition of ALS, FTD, and Parkinson’s disease organizations write that it is their goal to ensure every person living with a neurodegenerative disease is seen, counted, and supported through data-informed public policy and research investment. The interconnectedness of many neurodegenerative diseases means improving data collection for one condition strengthens understanding across the field. Several supporters highlight that the explicit inclusion of FTD and other dementias within the definition of neurodegenerative disease reflects the current state of the science around the interconnectedness of neurodegenerative diseases and emphasize that comprehensive data collection will better inform research, care, resource allocation, and eventually, outcomes for patients. California Life Sciences writes that the existing registry infrastructure uses electronic medical records and established reporting mechanisms to collect data without creating unnecessary administrative burden.

Prepared by: Natalie Gehred / HEALTH / (916) 651-4111

8/24/26 16:47:03

**** END ****

SENATE THIRD READING

STR Bill Id:SB 1047

Author:(Niello and Allen)

As Amended Ver:August 19, 2026

Majority vote

SUMMARY

Expands data collection and reporting requirements for the California Neurodegenerative Disease Registry (CNDR) to include the incidence and prevalence of frontotemporal degeneration (FTD).

Major Provisions

COMMENTS

Neurodegenerative Disease Registry Program. CNDR is California's statewide population-based neurodegenerative disease surveillance system. State law requires the Department of Public Health (DPH) to collect other neurodegenerative disease information (other than information on Parkinson's disease, for which the DPH began collecting information in 2018). According to DPH's website, DPH will use the data collected by CNDR to determine incidence and prevalence of other neurodegenerative diseases such as Alzheimer's disease, Multiple Sclerosis, Huntington's disease, and amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease in California.

Frontotemporal Degeneration. According to the information on the Association for Frontotemporal Degeneration's (AFTD) website, FTD, also frequently referred to as frontotemporal dementia, frontotemporal lobar degeneration (FTLD), or Pick's disease refers to a group of brain disorders caused by degeneration or nerve cell loss mainly in the brain's frontal lobes (the areas behind the forehead) and/or its temporal lobes (the regions behind the ears).

The nerve cell damage caused by FTD leads to loss of function in these brain regions. Symptoms vary, but common ones include uncharacteristic personality changes, apathy, and unexplained struggles with decision-making, movement, speaking or language comprehension. Often people appear physically healthy despite the neurodegeneration.

AFTD notes that although age of onset ranges from 21 to 80, most FTD cases occur between 45 and 64. According to Johns Hopkins Medicine's website, FTD disorders are some of the most common dementias that begin in people of younger ages than typically seen with dementia. AFTD states that the economic burden of FTD is approximately $120,000 per year, which is nearly double the amount associated with Alzheimer's.

FTD's estimated U.S. prevalence is around 60,000 cases, and many in the medical community remain unfamiliar with it. FTD is frequently misdiagnosed as Alzheimer's, depression, Parkinson's disease, or a psychiatric condition. On average, it currently takes 3.6 years to get an accurate diagnosis.

According to Johns Hopkins Medicine's website, the most common types of FTD are:

1. Frontal variant. This form of FTD changes behavior and personality; and,
2. Primary progressive aphasia. Aphasia means trouble with communication. This form has two subtypes:
   1. Nonfluent aphasia, which affects the ability to speak fluently and causes grammar impairment; and,
   2. Semantic dementia, which affects how a person uses and understands language. Unlike nonfluent aphasia, people are still able to speak fluently and grammatically, but their speech lacks meaning.

Less common forms of FTD affect movement, causing symptoms similar to Parkinson's disease or ALS. At this time, there is no cure for FTD, but healthcare providers may prescribe medicine to treat symptoms, including antidepressants to help treat anxiety and control obsessive-compulsive behaviors and other symptoms, prescription sleeping aids to help ease insomnia and other sleep disturbances, and antipsychotic medicines to reduce irrational and compulsive behaviors. Behavior modification may help control unacceptable or risky behaviors, and speech and language pathologists and physical and occupational therapists can help with adjustment to some of the changes caused by FTD.

FTD can lead to an increased risk for other illnesses that can be more serious. Failure to thrive and pneumonia are the most common causes of death for people with FTD. People are also at increased risk for infections and fall-related injuries. 

Other Dementias. According to an article published in Harvard Health Publishing titled, "Alzheimer's disease versus other types of dementia: Understanding the differences," dementia is an umbrella term for a decline in cognitive ability. Alzheimer's disease is a type of dementia, and it's also the most common cause of dementia, accounting for 60% to 80% of all dementias. In addition to Alzheimer's disease, there are many causes of irreversible dementia, including:

1. Vascular disease. Vascular dementia is a type of dementia caused by brain damage from impaired blood flow. Dementia may occur following a large stroke, after multiple small strokes, or when small arteries in the brain narrow, leading to decreased blood flow. Vascular dementia is the second most common type of dementia, accounting for up to 20% of cases;
2. Lewy body disease (LBD). LBD refers to dementia associated with accumulation of abnormal protein clumps inside brain cells. LBD causes 5% to 10% of dementias;
3. FTD. As discussed, above;
4. Creutzfeldt-Jakob disease. This disease is a rare, rapidly progressive dementia which occurs when a normal protein in the brain is transformed into an unhealthy one;
5. Degenerative diseases. These include Huntington's disease, a rare inherited disorder linked to an abnormal gene that's also a type of dementia; and Pick's disease, characterized by abnormal clumps of tau protein found within neurons; and,
6. Mixed dementia. Mixed dementia describes a case in which two or more types of dementia occur simultaneously. The most common combination is Alzheimer's disease and vascular dementia.

This bill requires DPH to collect information on FTD within the CNDR and additionally specifies that the definition of neurogenerative disease includes other dementias (in addition to Alzheimer's disease), explicitly authorizing DPH to collect information on these diseases as well. This bill also extends the sunset of the CNDR from 2028 to 2032.

According to the Author

This bill adds FTD to the CNDR. FTD is a terminal and incurable neurodegenerative disease, causing impairments to speech, personality, behavior, and motor skills which constitutes a major public health concern. FTD represents an estimated 5-15% of dementia cases and is the most common form of dementia for people under 60. The author continues that this bill will help prioritize FTD so researchers can better identify and treat the FTD community and help to speed research into the causes, treatments and hopefully cures for FTD. The author continues that adding FTD to the registry will provide a deeper understanding of the patient population which will help inform patients of clinical trials, a critical tool for those dealing with this disease. The author concludes that this bill also extends the sunset date of CNDR to continue their work on behalf of other previously approved neurodegenerative diseases.

Arguments in Support

AFTD is the sponsor of this bill and writes in support, stating that although neurogenerative diseases may differ in symptoms and progression, they are united by common challenges: delayed or inaccurate diagnoses, limited or nonexistent treatment options, significant caregiver burdens, and profound economic and emotional costs. AFTD continues that neurogenerative diseases are not isolated from one another; many share underlying biological mechanisms and genetic risk factors, with certain gene mutations implicated across multiple disorders. AFTD continues that individuals diagnosed with one neurodegenerative condition may later exhibit features of another, reflecting shared pathways of neurodegeneration. AFTD states that because of this interconnectedness, improving data collection for one condition strengthens understanding across the field. AFTD continues that this bill also extends the sunset date of the CNDR to continue its important work on behalf of the broader neurodegenerative community. AFTD continues that the CNDR is a vital and cost-effective resource for researchers, clinicians, and public health leaders working to understand disease impact, appropriately allocate resources, and improve pathways to care.

Arguments in Opposition

None on file.

FISCAL COMMENTS

According to the Assembly Appropriations Committee, DPH estimates General Fund costs of approximately $2.7 million per year in fiscal years (FYs) 2027-28 through 2031-32 to implement provisions of this bill. DPH states these costs include the following:

1. Staff: 7.3 full-time equivalents (FTEs) to support programmatic functions, two FTEs for information technology support, and an additional FTE to incorporate FTD into data collection requirements. Staff serve as subject matter experts, perform data management system (DMS) activities and analysis, create datasets, conduct outreach, and provide technical assistance to data providers, associations, and partners to ensure data accuracy and to meet the statutory mandate.
2. Information technology: $400,000 to support the CNDR DMS, including costs associated with the California Reportable Disease Information Exchange manual entry web portal, integration and data validation tool, associated software, and maintenance and operations of the DMS.
3. Promulgating regulations: $63,000.

VOTES

SENATE FLOOR: 39-0-1

YES: Allen, Alvarado-Gil, Archuleta, Arreguín, Ashby, Becker, Blakespear, Cabaldon, Caballero, Cervantes, Choi, Cortese, Durazo, Gonzalez, Grayson, Grove, Hurtado, Jones, Laird, Limón, McGuire, McNerney, Menjivar, Niello, Ochoa Bogh, Padilla, Pérez, Reyes, Richardson, Rubio, Seyarto, Smallwood-Cuevas, Stern, Strickland, Umberg, Valladares, Wahab, Weber Pierson, Wiener

ABS, ABST OR NV: Dahle

ASM HEALTH: 15-0-1

YES: Bonta, Chen, Addis, Aguiar-Curry, Ahrens, Caloza, Carrillo, Mark González, Patel, Patterson, Celeste Rodriguez, Sanchez, Schiavo, Sharp-Collins, Stefani

ABS, ABST OR NV: Johnson

ASM APPROPRIATIONS: 15-0-0

YES: Wicks, Hoover, Arambula, Calderon, Caloza, Dixon, Fong, Mark González, Krell, Pacheco, Pellerin, Sharp-Collins, Solache, Ta, Tangipa

UPDATED

VERSION: August 19, 2026

CONSULTANT: Lara Flynn / HEALTH / (916) 319-2097 FN: 0003848

SENATE THIRD READING

STR Bill Id:SB 1047

Author:(Niello and Allen)

As Amended Ver:May 14, 2026

Majority vote

SUMMARY

Expands data collection and reporting requirements for the California Neurodegenerative Disease Registry (CNDR) to include the incidence and prevalence of frontotemporal degeneration (FTD).

Major Provisions

COMMENTS

Neurodegenerative Disease Registry Program. CNDR is California's statewide population-based neurodegenerative disease surveillance system. State law requires the Department of Public Health (DPH) to collect other neurodegenerative disease information (other than information on Parkinson's disease, for which the DPH began collecting information in 2018). According to DPH's website, DPH will use the data collected by CNDR to determine incidence and prevalence of other neurodegenerative diseases such as Alzheimer's disease, Multiple Sclerosis, Huntington's disease, and amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease in California.

Frontotemporal Degeneration. According to the information on the Association for Frontotemporal Degeneration's (AFTD) website, FTD, also frequently referred to as frontotemporal dementia, frontotemporal lobar degeneration (FTLD), or Pick's disease refers to a group of brain disorders caused by degeneration or nerve cell loss mainly in the brain's frontal lobes (the areas behind the forehead) and/or its temporal lobes (the regions behind the ears).

The nerve cell damage caused by FTD leads to loss of function in these brain regions. Symptoms vary, but common ones include uncharacteristic personality changes, apathy, and unexplained struggles with decision-making, movement, speaking or language comprehension. Often people appear physically healthy despite the neurodegeneration.

AFTD notes that although age of onset ranges from 21 to 80, most FTD cases occur between 45 and 64. According to Johns Hopkins Medicine's website, FTD disorders are some of the most common dementias that begin in people of younger ages than typically seen with dementia. AFTD states that the economic burden of FTD is approximately $120,000 per year, which is nearly double the amount associated with Alzheimer's.

FTD's estimated U.S. prevalence is around 60,000 cases, and many in the medical community remain unfamiliar with it. FTD is frequently misdiagnosed as Alzheimer's, depression, Parkinson's disease, or a psychiatric condition. On average, it currently takes 3.6 years to get an accurate diagnosis.

According to Johns Hopkins Medicine's website, the most common types of FTD are:

1. Frontal variant. This form of FTD changes behavior and personality; and,
2. Primary progressive aphasia. Aphasia means trouble with communication. This form has two subtypes:
   1. Nonfluent aphasia, which affects the ability to speak fluently and causes grammar impairment; and,
   2. Semantic dementia, which affects how a person uses and understands language. Unlike nonfluent aphasia, people are still able to speak fluently and grammatically, but their speech lacks meaning.

Less common forms of FTD affect movement, causing symptoms similar to Parkinson's disease or ALS. At this time, there is no cure for FTD, but healthcare providers may prescribe medicine to treat symptoms, including antidepressants to help treat anxiety and control obsessive-compulsive behaviors and other symptoms, prescription sleeping aids to help ease insomnia and other sleep disturbances, and antipsychotic medicines to reduce irrational and compulsive behaviors. Behavior modification may help control unacceptable or risky behaviors, and speech and language pathologists and physical and occupational therapists can help with adjustment to some of the changes caused by FTD.

FTD can lead to an increased risk for other illnesses that can be more serious. Failure to thrive and pneumonia are the most common causes of death for people with FTD. People are also at increased risk for infections and fall-related injuries. 

Other Dementias. According to an article published in Harvard Health Publishing titled, "Alzheimer's disease versus other types of dementia: Understanding the differences," dementia is an umbrella term for a decline in cognitive ability. Alzheimer's disease is a type of dementia, and it's also the most common cause of dementia, accounting for 60% to 80% of all dementias. In addition to Alzheimer's disease, there are many causes of irreversible dementia, including:

1. Vascular disease. Vascular dementia is a type of dementia caused by brain damage from impaired blood flow. Dementia may occur following a large stroke, after multiple small strokes, or when small arteries in the brain narrow, leading to decreased blood flow. Vascular dementia is the second most common type of dementia, accounting for up to 20% of cases.
   1. Lewy body disease (LBD). LBD refers to dementia associated with accumulation of abnormal protein clumps inside brain cells. LBD causes 5% to 10% of dementias;
   2. FTD. As discussed, above;
   3. Creutzfeldt-Jakob disease. This disease is a rare, rapidly progressive dementia which occurs when a normal protein in the brain is transformed into an unhealthy one;
   4. Degenerative diseases. These include Huntington's disease, a rare inherited disorder linked to an abnormal gene that's also a type of dementia; and Pick's disease, characterized by abnormal clumps of tau protein found within neurons; and,
   5. Mixed dementia. Mixed dementia describes a case in which two or more types of dementia occur simultaneously. The most common combination is Alzheimer's disease and vascular dementia.

This bill requires DPH to collect information on FTD within the CNDR and additionally specifies that the definition of neurogenerative disease includes other dementias (in addition to Alzheimer's disease), explicitly authorizing DPH to collect information on these diseases as well. This bill also extends the sunset of the CNDR from 2028 to 2032.

According to the Author

This bill adds FTD to the CNDR. FTD is a terminal and incurable neurodegenerative disease, causing impairments to speech, personality, behavior, and motor skills which constitutes a major public health concern. FTD represents an estimated 5-15% of dementia cases and is the most common form of dementia for people under 60. The author continues that this bill will help prioritize FTD so researchers can better identify and treat the FTD community and help to speed research into the causes, treatments and hopefully cures for FTD. The author continues that adding FTD to the registry will provide a deeper understanding of the patient population which will help inform patients of clinical trials, a critical tool for those dealing with this disease. The author concludes that this bill also extends the sunset date of CNDR to continue their work on behalf of other previously approved neurodegenerative diseases.

Arguments in Support

AFTD is the sponsor of this bill and writes in support, stating that although neurogenerative diseases may differ in symptoms and progression, they are united by common challenges: delayed or inaccurate diagnoses, limited or nonexistent treatment options, significant caregiver burdens, and profound economic and emotional costs. AFTD continues that neurogenerative diseases are not isolated from one another; many share underlying biological mechanisms and genetic risk factors, with certain gene mutations implicated across multiple disorders. AFTD continues that individuals diagnosed with one neurodegenerative condition may later exhibit features of another, reflecting shared pathways of neurodegeneration. AFTD states that because of this interconnectedness, improving data collection for one condition strengthens understanding across the field. AFTD continues that this bill also extends the sunset date of the CNDR to continue its important work on behalf of the broader neurodegenerative community. AFTD continues that the CNDR is a vital and cost-effective resource for researchers, clinicians, and public health leaders working to understand disease impact, appropriately allocate resources, and improve pathways to care.

Arguments in Opposition

None on file.

FISCAL COMMENTS

According to the Assembly Appropriations Committee, DPH estimates General Fund costs of approximately $2.7 million per year in fiscal years (FYs) 2027-28 through 2031-32 to implement provisions of this bill. DPH states these costs include the following:

1. Staff: 7.3 full-time equivalents (FTEs) to support programmatic functions, two FTEs for information technology support, and an additional FTE to incorporate FTD into data collection requirements. Staff serve as subject matter experts, perform data management system (DMS) activities and analysis, create datasets, conduct outreach, and provide technical assistance to data providers, associations, and partners to ensure data accuracy and to meet the statutory mandate.
2. Information technology: $400,000 to support the CNDR DMS, including costs associated with the California Reportable Disease Information Exchange manual entry web portal, integration and data validation tool, associated software, and maintenance and operations of the DMS.
3. Promulgating regulations: $63,000

VOTES

SENATE FLOOR: 39-0-1

YES: Allen, Alvarado-Gil, Archuleta, Arreguín, Ashby, Becker, Blakespear, Cabaldon, Caballero, Cervantes, Choi, Cortese, Durazo, Gonzalez, Grayson, Grove, Hurtado, Jones, Laird, Limón, McGuire, McNerney, Menjivar, Niello, Ochoa Bogh, Padilla, Pérez, Reyes, Richardson, Rubio, Seyarto, Smallwood-Cuevas, Stern, Strickland, Umberg, Valladares, Wahab, Weber Pierson, Wiener

ABS, ABST OR NV: Dahle

ASM HEALTH: 15-0-1

YES: Bonta, Chen, Addis, Aguiar-Curry, Ahrens, Caloza, Carrillo, Mark González, Patel, Patterson, Celeste Rodriguez, Sanchez, Schiavo, Sharp-Collins, Stefani

ABS, ABST OR NV: Johnson

ASM APPROPRIATIONS: 15-0-0

YES: Wicks, Hoover, Arambula, Calderon, Caloza, Dixon, Fong, Mark González, Krell, Pacheco, Pellerin, Sharp-Collins, Solache, Ta, Tangipa

UPDATED

VERSION: May 14, 2026

CONSULTANT: Lara Flynn / HEALTH / (916) 319-2097 FN: 0003586

Date of Hearing: July 1, 2026

ASSEMBLY COMMITTEE ON APPROPRIATIONS

Buffy Wicks, Chair

SBPCA Bill Id:SB 1047

Author:(Niello) – As Amended Ver:May 14, 2026

Urgency: No State Mandated Local Program: No Reimbursable: No

SUMMARY:

This bill expands California’s Neurodegenerative Disease Registry Program (CNDR) to include frontotemporal degeneration (FTD) and other dementias within the definition of neurodegenerative disease. The bill also extends the CNDR’s sunset date from January 1, 2028, to January 1, 2032.

FISCAL EFFECT:

The California Department of Public Health (CDPH) estimates General Fund costs of approximately $2.7 million per year in fiscal years (FYs) 2027-28 through 2031-32 to implement provisions of this bill. CDPH states these costs include the following:

• Staff: 7.3 full-time equivalents (FTEs) to support programmatic functions, two FTEs for information technology support, and an additional FTE to incorporate FTD into data collection requirements. Staff serve as subject matter experts, perform data management system (DMS) activities and analysis, create datasets, conduct outreach, and provide technical assistance to data providers, associations, and partners to ensure data accuracy and to meet the statutory mandate.
  
• Information technology: $400,000 to support the CNDR DMS, including costs associated with the California Reportable Disease Information Exchange manual entry web portal, integration and data validation tool, associated software, and maintenance and operations of the DMS.
    
• Promulgating regulations: $63,000. 

COMMENTS:

1. Purpose. This bill is sponsored by the Association for Frontotemporal Degeneration (AFTD). According to the author:

FTD is a terminal and incurable neurodegenerative disease, causing impairments to speech, personality, behavior, and motor skills which constitutes a major public health concern. FTD represents an estimated 5-15% of dementia cases and is the most common form of dementia for people under 60.

Existing law requires CDPH to collect and establish a registry for Parkinson’s Disease, amyotrophic lateral sclerosis (ALS), multiple sclerosis and Huntington’s disease. It is reported that 75% of physicians in California already use the necessary record-keeping system. [This bill] will help prioritize FTD so researchers can better identify and treat the FTD community. This will help speed research into the causes, treatments and hopefully cures for FTD. Adding FTD to the registry will provide a deeper understanding of the patient population which will help inform patients of clinical trials, a critical tool for those dealing with this disease.

1. Background. FTD. According to the information on the AFTD website, FTD, also referred to as frontotemporal dementia, frontotemporal lobar degeneration, or Pick’s disease, refers to a group of brain disorders caused by degeneration or nerve cell loss mainly in the brain's frontal lobes (the areas behind the forehead), temporal lobes (the regions near the ears), or both areas. FTD causes nerve cell damage, leading to loss of function in these brain regions. Common symptoms vary and may include personality changes; apathy; and unexplained struggles with decision-making, movement, speaking or language comprehension. According to Johns Hopkins Medicine’s website, FTD disorders are some of the most common dementias that begin in people of younger ages than typically seen with dementia.
   
   The estimated U.S. prevalence of FTD is around 60,000 cases. FTD is frequently misdiagnosed as Alzheimer’s disease, depression, Parkinson’s disease, or a psychiatric condition. It takes an average of 3.6 years to get an accurate diagnosis of FTD.

CNDR. CNDR is California's statewide, population-based neurodegenerative disease surveillance system. CDPH states it will use CNDR data to determine incidence and prevalence of neurodegenerative diseases in California.

Existing CNDR funding expires at the end of FY 2026-27. Because this bill extends the sunset date for the entire CNDR, CDPH notes the fiscal estimate for the bill includes the full cost to operate the CNDR, including data collection for all conditions already designated in statute (ALS, Alzheimer’s disease, multiple sclerosis, Huntington’s disease, and other dementias), as well as FTD. The cost estimate therefore reflects the baseline cost of continued registry operations, and an additional FTE to incorporate FTD into data collection requirements.

Analysis Prepared by: Allegra Kim / APPR. / (916) 319-2081

Date of Hearing: June 16, 2026

ASSEMBLY COMMITTEE ON HEALTH

Mia Bonta, Chair

SBPCA Bill Id:SB 1047

Author:(Niello) – As Amended Ver:May 14, 2026

SENATE VOTE:

SUBJECT: Neurodegenerative disease registry program.

SUMMARY: Expands data collection and reporting requirements for the California Neurodegenerative Disease Registry (CNDR). Specifically, this bill:

1. Requires the State Department of Public Health (DPH) to establish a system for the collection of information determining the incidence and prevalence of frontotemporal degeneration (FTD) within the CNDR.
2. Specifies that the definition of “neurogenerative disease” includes other dementias (in addition to Alzheimer’s disease).
3. Extends the sunset date of the CNDR from 2028 to 2032.

EXISTING LAW:

1. Requires DPH to 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. Requires DPH to designate the specified neurodegenerative diseases as a disease required to be reported in the state or any part of the state. Requires all cases of neurodegenerative disease diagnosed or treated in California to be reported to DPH. [Health and Safety Code (HSC) § 103871 (a) and (b)]
2. Requires DPH to provide notification of the mandatory reporting of neurodegenerative disease on its internet website and to 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. [HSC § 103871 (c)]
3. Requires a hospital, facility, physician and surgeon, or other health care provider diagnosing or providing treatment for a patient with a neurodegenerative disease to report each case of a neurodegenerative disease to DPH in a format prescribed by DPH. [HSC § 103871 (d)]
4. Authorizes, if the hospital or other facility fails to report in a format prescribed by the department, DPH’s authorized representative to access the information from the hospital or the facility and report it in the appropriate format. Requires the hospital or other facility to reimburse DPH or the authorized representative for its costs to access and report the information. [HSC § 103871 (e)]
5. Requires a physician and surgeon, hospital, outpatient clinic, and any other facility, individual, or agency providing diagnostic or treatment services to a patient with a neurodegenerative disease to grant to DPH or the authorized representative access to all records that would identify a case of a neurodegenerative disease or would establish characteristics of a neurodegenerative disease, treatment of a neurodegenerative disease, or medical status of any identified patient with a neurodegenerative disease. [HSC § 103871 (f)]
6. Makes willful failure to grant access to those records punishable by a civil penalty of up to five hundred dollars ($500) each day access is refused. Requires any civil penalties collected to be deposited by DPH in the General Fund (GF). [Ibid.]
7. Requires, except as otherwise provided, all information collected pursuant to the CNDR to be confidential. [HSC § 103871 (g)]
8. Specifies “neurodegenerative disease” may also include, but need not be limited to, Alzheimer’s disease, multiple sclerosis (MS), and Huntington’s disease. [HSC § 103871 (i)]

FISCAL EFFECT: According to the Senate Appropriations Committee, unknown ongoing GF costs, potentially hundreds of thousands, for DPH for state administration and implementation.

COMMENTS:

1. PURPOSE OF THIS BILL. According to the author, this bill adds FTD to the CNDR. FTD is a terminal and incurable neurodegenerative disease, causing impairments to speech, personality, behavior, and motor skills which constitutes a major public health concern. FTD represents an estimated 5-15% of dementia cases and is the most common form of dementia for people under 60. The author continues that this bill will help prioritize FTD so researchers can better identify and treat the FTD community and help to speed research into the causes, treatments and hopefully cures for FTD. The author continues that adding FTD to the registry will provide a deeper understanding of the patient population which will help inform patients of clinical trials, a critical tool for those dealing with this disease. The author concludes that this bill also extends the sunset date of CNDR to continue their work on behalf of other previously approved neurodegenerative diseases.
2. BACKGROUND.
   1. Neurogenerative Disease Registry Program. CNDR is California's statewide population-based neurodegenerative disease surveillance system. State law requires DPH to collect other neurodegenerative disease information (other than information on Parkinson's disease, for which the DPH began collecting information in 2018). According to DPH’s website, DPH will use the data collected by CNDR to determine incidence and prevalence of other neurodegenerative diseases such as Alzheimer's disease, MS, Huntington's disease, and ALS, also known as Lou Gehrig's disease in California.
   2. Frontotemporal Degeneration. According to the information on the Association for Frontotemporal Degeneration’s (AFTD) website, FTD, also frequently referred to as frontotemporal dementia, frontotemporal lobar degeneration (FTLD), or Pick’s disease refers to a group of brain disorders caused by degeneration or nerve cell loss mainly in the brain's frontal lobes (the areas behind the forehead) and/or its temporal lobes (the regions behind the ears).

The nerve cell damage caused by FTD leads to loss of function in these brain regions. Symptoms vary, but common ones include uncharacteristic personality changes, apathy, and unexplained struggles with decision-making, movement, speaking or language comprehension. Often people appear physically healthy despite the neurodegeneration.

AFTD notes that although age of onset ranges from 21 to 80, most FTD cases occur between 45 and 64. According to Johns Hopkins Medicine’s website, FTD disorders are some of the most common dementias that begin in people of younger ages than typically seen with dementia. AFTD states that the economic burden of FTD is approximately $120,000 per year, which is nearly double the amount associated with Alzheimer's.

FTD’s estimated U.S. prevalence is around 60,000 cases, and many in the medical community remain unfamiliar with it. FTD is frequently misdiagnosed as Alzheimer’s, depression, Parkinson’s disease, or a psychiatric condition. On average, it currently takes 3.6 years to get an accurate diagnosis.

According to Johns Hopkins Medicine’s website, the most common types of FTD are:

• • 1. Frontal variant. This form of FTD changes behavior and personality; and,
    2. Primary progressive aphasia. Aphasia means trouble with communication. This form has two subtypes:
       1. Nonfluent aphasia, which affects the ability to speak fluently and causes grammar impairment; and,
       2. Semantic dementia, which affects how a person uses and understands language. Unlike nonfluent aphasia, people are still able to speak fluently and grammatically, but their speech lacks meaning.

Less common forms of FTD affect movement, causing symptoms similar to Parkinson’s disease or ALS. At this time, there is no cure for FTD, but healthcare providers may prescribe medicine to treat symptoms, including antidepressants to help treat anxiety and control obsessive-compulsive behaviors and other symptoms, prescription sleeping aids to help ease insomnia and other sleep disturbances, and antipsychotic medicines to reduce irrational and compulsive behaviors. Behavior modification may help control unacceptable or risky behaviors, and speech and language pathologists and physical and occupational therapists can help with adjustment to some of the changes caused by FTD.

FTD can lead to an increased risk for other illnesses that can be more serious. Failure to thrive and pneumonia are the most common causes of death for people with FTD. People are also at increased risk for infections and fall-related injuries. 

• 1. Other Dementias. According to an article published in Harvard Health Publishing titled, “Alzheimer’s disease versus other types of dementia: Understanding the differences,” dementia is an umbrella term for a decline in cognitive ability. Alzheimer's disease is a type of dementia, and it's also the most common cause of dementia, accounting for 60 to 80% of all dementias. In addition to Alzheimer's disease, there are many causes of irreversible dementia, including:
     1. Vascular disease. Vascular dementia is a type of dementia caused by brain damage from impaired blood flow. Dementia may occur following a large stroke, after multiple small strokes, or when small arteries in the brain narrow, leading to decreased blood flow. Vascular dementia is the second most common type of dementia, accounting for up to 20% of cases.
     2. Lewy body disease (LBD). LBD refers to dementia associated with accumulation of abnormal protein clumps inside brain cells. LBD causes 5% to 10% of dementias;
     3. FTD. Please see b) above for background;
     4. Creutzfeldt-Jakob disease. This disease is a rare, rapidly progressive dementia which occurs when a normal protein in the brain is transformed into an unhealthy one;
     5. Degenerative diseases. These include Huntington's disease, a rare inherited disorder linked to an abnormal gene that's also a type of dementia; and Pick's disease, characterized by abnormal clumps of tau protein found within neurons; and,
     6. Mixed dementia. Mixed dementia describes a case in which two or more types of dementia occur simultaneously. The most common combination is Alzheimer's disease and vascular dementia.
  2. What does this bill do? This bill requires DPH to collect information on FTD within the CNDR and additionally specifies that the definition of neurogenerative disease includes other dementias (in addition to Alzheimer’s disease), explicitly authorizing DPH to collect information on these diseases as well. This bill also extends the sunset of the CNDR from 2028 to 2032.

1. SUPPORT. AFTD is the sponsor of this bill and writes in support, stating that although neurogenerative diseases may differ in symptoms and progression, they are united by common challenges: delayed or inaccurate diagnoses, limited or nonexistent treatment options, significant caregiver burdens, and profound economic and emotional costs. AFTD continues that neurogenerative diseases are not isolated from one another; many share underlying biological mechanisms and genetic risk factors, with certain gene mutations implicated across multiple disorders. AFTD continues that individuals diagnosed with one neurodegenerative condition may later exhibit features of another, reflecting shared pathways of neurodegeneration. AFTD states that because of this interconnectedness, improving data collection for one condition strengthens understanding across the field. AFTD continues that this bill also extends the sunset date of the CNDR to continue its important work on behalf of the broader neurodegenerative community. AFTD continues that the CNDR is a vital and cost-effective resource for researchers, clinicians, and public health leaders working to understand disease impact, appropriately allocate resources, and improve pathways to care.
2. RELATED LEGISLATION. AB 1648 (M. Rodriguez) of 2026 would have required DPH to establish the California Epilepsy Program for the purposes of conducting epidemiological assessments of the incidence and prevalence of epilepsy and seizures. AB 1648 was held on the Assembly Appropriations suspense file.
3. PREVIOUS LEGISLATION.
   1. AB 829 (Sharp-Collins), Chapter 99, Statutes of 2025 establishes the Parkinson's Disease Registry Tax Contribution Fund. Authorizes a taxpayer to make a voluntary contribution to the fund on their state personal income tax return from tax year 2025 to 2032, if the fund meets the minimum contribution amount of $250,000 annually. Directs contributions to the fund be allocated to DPH for the purposes of administering the Richard Paul Hemann Parkinson's Disease Program, as specified.
   2. AB 2680 (Aguiar-Curry), Chapter 335, Statutes of 2024 renames the Alzheimer’s Disease and Related Disorders Advisory Committee to the Alzheimer’s Disease and Related Conditions Advisory Committee, and expands the number of members serving on the committee from 14 to at least 16, but not more than 20, members. Prescribes the qualifications of certain members on the committee, and revise the duties of the committee. Revises references to Alzheimer’s disease to also refer to related conditions.
   3. AB 424 (Bryan), Chapter 522, Statutes of 2023 requires the CNDR to collect information on the incidence and prevalence of ALS.
   4. AB 133 (Committee on Budget), Chapter 143, Statutes of 2021 establishes the CNDR.

REGISTERED SUPPORT / OPPOSITION:

Support

The Association for Frontotemporal Degeneration (sponsor)
ALS Association
ALS Network
Alzheimer's Greater Los Angeles
Alzheimer's Orange County
Alzheimer's San Diego
Biocom
Biocom California
California Life Sciences Association
Cure MAPT FTD
CureGRN
End Chronic Disease Inc.
Michael J. Fox Foundation for Parkinson's Research
The Bluefield Project to Cure FTD

Opposition

None on file

Analysis Prepared by: Eliza Brooks / HEALTH / (916) 319-2097

 THIRD READING  

Bill No: SB 1047

Author: Niello (R) and Allen (D), et al.

Amended: 5/14/26

Vote: 21

SENATE HEALTH COMMITTEE: 11-0, 3/25/26

AYES: Weber Pierson, Valladares, Caballero, Durazo, Gonzalez, Grove, Menjivar, Padilla, Pérez, Rubio, Smallwood-Cuevas

SENATE APPROPRIATIONS COMMITTEE: 7-0, 5/14/26

AYES: Cervantes, Seyarto, Cabaldon, Dahle, Grayson, Richardson, Wahab

SUBJECT: Neurodegenerative disease registry program

SOURCE: Association for Frontotemporal Degeneration

DIGEST:

This bill (1) expands data collection and reporting requirements for the California Neurodegenerative Disease Registry Program (CNDRP) to include frontotemporal degeneration; (2) extends the CNDRP to January 1, 2032.

ANALYSIS:

Existing law:

1. Requires the California Department of Public Health (CDPH), under the CNDRP and until January 1, 2028, to collect data on the incidence and prevalence of neurodegenerative disease in California, including, but not limited to, amyotrophic lateral sclerosis (ALS). [Health and Safety Code (HSC) §103871 and §103871.2]
2. Allows CDPH to designate which neurodegenerative diseases must be reported and to prescribe the data collection method and data format. [HSC §103871]
3. Requires a hospital, facility, physician, or other health care provider diagnosing or treating a patient with a neurodegenerative disease to report all cases diagnosed or treated in the state to CDPH. [HSC §103871]
4. Specifies that neurodegenerative disease may include but is not limited to Alzheimer’s disease, multiple sclerosis, and Huntington’s disease. [HSC §103871]

This bill:

1. Expands data collection and reporting requirements for the CNDRP to include frontotemporal degeneration (FTD).
2. Extends the sunset date of the CNDRP to January 1, 2032.

Comments

According to the author of this bill:

This bill will direct the CNDRP to collect data on FTD and require hospitals and health care professionals to report cases. FTD is a terminal and incurable neurodegenerative disease, causing impairments to speech, personality, behavior, and movement, and constitutes a major public health concern. FTD represents an estimated 5-15% of dementia cases and is the most common form of dementia for people under 60. It is reported that 75% of physicians in California already use the necessary record-keeping system. This bill will help prioritize FTD so researchers can better identify and treat the FTD community, speeding research into the causes, treatments, and hopefully cures for FTD, as well as informing patients of clinical trials, a critical tool for those dealing with this disease. This bill also extends the sunset date to continue the work on behalf of other previously approved neurodegenerative diseases.

Background

CNDRP. The CNDRP, within CDPH’s Chronic Disease Surveillance and Research Branch, was established in 2021 to collect data on the incidence of neurodegenerative disease in the state to better understand its prevalence among different populations and changes over time. The CNDRP has authority to determine which diseases must be reported. Statute requires that ALS cases be reported, and CDPH separately requires reporting for Alzheimer’s disease and multiple sclerosis. According to the CNDRP, the program began collecting data on multiple sclerosis on July 1, 2023, and has expanded reporting requirements to include Alzheimer’s in July of 2025 and ALS in July of 2026. Parkinson’s disease is reported via the Richard Paul Hemann California Parkinson’s Disease Registry, a similar program that predates the CNDRP.

CNDRP data are obtained from patients’ medical records and include their identifying information, demographic data, patient visit information, primary physician information, primary ICD-10 diagnosis code, and disease onset information. CDPH accepts data from registered providers through either manual data entry into a secure web portal or the automated electronic transfer of case files from electronic medical record systems. The data collected by CNDRP are confidential, meaning that detailed data may only be disclosed to researchers who have obtained approval from their institutional review board and have demonstrated their ability to maintain data security, other state neurodegenerative disease registries, federal neurodegenerative disease control agencies, and local health officers. The data can only be used for the stated purpose of their request. Patients and those legally authorized to obtain a patient’s confidential information can also access their data.

FTD. According to the National Institute of Neurological Disorders and Stroke, FTD (also known as frontotemporal dementia, frontotemporal disorder, frontotemporal lobar degeneration, or Pick’s disease) is caused by damage to neurons in the frontal and temporal lobes of the brain. Neuronal damage results in progressive atrophy of the lobes, disrupting the functions associated with these regions, such as planning and decision-making, emotional regulation, memory, and language. Depending on what area of the brain is affected, patients may also display difficulty with motor control. Because FTD is progressive, an individual’s symptoms will change over time as more parts of the brain are affected. FTD is diagnosed by neurological and cognitive exams and behavioral evaluations, family history and genetic testing, brain imaging, and laboratory tests that exclude the possibility of Alzheimer’s, but can only be confirmed postmortem.

FTD is usually diagnosed in three different categories: behavioral variant frontotemporal dementia (bvFTD); primary progressive aphasia (PPA); and movement disorders. Patients diagnosed with bvFTD display changes in personality, behavior, and judgment, with or without problems with cognition or memory. Those with PPA have difficulty with speaking, reading, writing, and understanding words. PPA patients often display cognitive symptoms of dementia as the disease progresses, and occasionally display behavioral changes as well. FTD-induced movement disorders include corticobasal syndrome, progressive supranuclear palsy, FTD with parkinsonism, and FTD-ALS. Corticobasal syndrome is characterized by difficulty using hands or arms, sometimes beginning on one side of the body before progressing to both. Those with progressive supranuclear palsy have difficulty walking, balancing, and moving facial muscles, and it is characterized by a fixed stare due to trouble with eye movements. Individuals with FTD with parkinsonism display symptoms similar to Parkinson’s disease, including slowed movement, stiffness, and balance issues. FTD-ALS is a combination of bvFTD and ALS, including ALS symptoms like progressive muscle weakness and muscle jerks or wiggling. The movement disorders may also include symptoms affecting behavior, thinking, and language. According to the Association for Frontotemporal Degeneration, an estimated 50,000-60,000 Americans have FTD. Unlike Alzheimer’s and many other dementias, FTD primarily affects middle-aged individuals. About 60% of diagnoses occur between 45 and 64 years of age, when many are still working and caring for family members. The life expectancy for those with FTD ranges from two to 20 years from the onset of symptoms.

FISCAL EFFECT: Appropriation: No Fiscal Com.: Yes Local: No

According to the Senate Appropriations Committee, unknown ongoing General Fund costs, potentially hundreds of thousands, for CDPH administration and implementation.

SUPPORT: (Verified 5/14/26)

Association for Frontotemporal Degeneration (source)

ALS Association

ALS Network

Alzheimer’s Greater Los Angeles

Alzheimer’s Orange County

Alzheimer’s San Diego

Biocom California

Bluefield Project

California Life Sciences Association

Cure MAPT FTD

Cure GRN

Michael J. Fox Foundation for Parkinson’s Research

Eleven individuals

OPPOSITION: (Verified 5/14/26)

None received

ARGUMENTS IN SUPPORT: The sponsors of this bill, the Association for Frontotemporal Degeneration, along with a coalition of ALS, FTD, and Parkinson’s disease organizations, write that it is their goal to ensure every person living with a neurodegenerative disease is seen, counted, and supported through data-informed public policy and research investment. The interconnectedness of many neurodegenerative diseases means improving data collection for one condition strengthens understanding across the field. They also support extending the sunset date of the CNDRP, describing the program as a vital and cost-effective resource for those working to understand disease impact, appropriately allocate resources, and improve pathways to care. Several supporters highlight that the explicit inclusion of FTD and other dementias within the definition of neurodegenerative disease reflects the current state of the science around the interconnectedness of neurodegenerative diseases and emphasize that comprehensive data collection will better inform research, care, resource allocation, and eventually, outcomes for patients. California Life Sciences writes that the existing registry infrastructure uses electronic medical records and established reporting mechanisms to collect data without creating unnecessary administrative burden.

Prepared by: Natalie Gehred / HEALTH / (916) 651-4111

5/18/26 15:19:35

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SENATE COMMITTEE ON

Senator Sabrina Cervantes, Chair

2025 - 2026 Regular Session

SB 1047 (Niello) - Neurodegenerative disease registry program

Bill Summary:

SB 1047 would require the California Department of Public Health (CDPH) to collect information determining the incidence and prevalence of frontotemporal degeneration (FTD).

*********** ANALYSIS ADDENDUM – SUSPENSE FILE ***********

The following information is revised to reflect amendments

adopted by the committee on May 14, 2026

Fiscal Impact:

Unknown ongoing General Fund costs, potentially hundreds of thousands, for the CDPH for state administration and implementation.

Author Amendments:

Add co-authors.

-- END --

SENATE COMMITTEE ON

Senator Sabrina Cervantes, Chair

2025 - 2026 Regular Session

SB 1047 (Niello) - Neurodegenerative disease registry program

Bill Summary:

SB 1047 would require the California Department of Public Health (CDPH) to collect information determining the incidence and prevalence of frontotemporal degeneration (FTD).

Fiscal Impact:

Unknown ongoing General Fund costs, potentially hundreds of thousands, for the CDPH for state administration and implementation.

Background:

Current law requires CDPH to 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. Current law provides that “neurodegenerative disease” may also include, but need not be limited to, Alzheimer’s disease, multiple sclerosis, and Huntington’s disease. The CDPH operates the California Neurodegenerative Disease Registry (CNDR) to collect this information. Current law sunsets these provisions on January 1, 2028.

According to the National Institute of Neurological Disorders and Stroke, FTD (also known as frontotemporal dementia, frontotemporal disorder, frontotemporal lobar degeneration, or Pick’s disease) is caused by damage to neurons in the frontal and temporal lobes of the brain. Neuronal damage results in progressive atrophy of the lobes, disrupting the functions associated with these regions, such as planning and decision-making, emotional regulation, memory, and language. Depending on what area of the brain is affected, patients may also display difficulty with motor control. Because FTD is progressive, an individual’s symptoms will change over time as more parts of the brain are affected. FTD is diagnosed by neurological and cognitive exams and behavioral evaluations, family history and genetic testing, brain imaging, and laboratory tests that exclude the possibility of Alzheimer’s, but can only be confirmed postmortem.

Proposed Law:

Specific provisions of the bill would:

• Require the CDPH to additionally collect information determining the incidence and prevalence of FTD.
• Provide that “neurodegenerative disease” may also include other dementias.
• Extend the sunset date from January 1, 2028 to January 1, 2032.

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SENATE COMMITTEE ON HEALTH

Senator Dr. Akilah Weber Pierson, Chair

BILL NO: SB 1047

SUBJECT: Neurodegenerative disease registry program

SUMMARY:

Expands data collection and reporting requirements for the California Neurodegenerative Disease Registry Program (CNDRP) to include frontotemporal degeneration. Extends the CNDRP to January 1, 2030.

Existing law:

1. Requires the California Department of Public Health (CDPH), under the CNDRP and until January 1, 2028, to collect data on the incidence and prevalence of neurodegenerative disease in California, including, but not limited to, amyotrophic lateral sclerosis (ALS). [HSC §103871 and §103871.2]
2. Allows CDPH to designate which neurodegenerative diseases must be reported and to prescribe the data collection method and data format. [HSC §103871]
3. Requires a hospital, facility, physician, or other health care provider diagnosing or treating a patient with a neurodegenerative disease to report all cases diagnosed or treated in the state to CDPH. [HSC §103871]
4. Specifies that neurodegenerative disease may include but is not limited to Alzheimer’s disease, multiple sclerosis, and Huntington’s disease. [HSC §103871]

This bill:

1. Expands data collection and reporting requirements for the CNDRP to include frontotemporal degeneration (FTD).
2. Extends the sunset date of the CNDRP to January 1, 2030.

FISCAL EFFECT:

This bill has not been analyzed by a fiscal committee.

COMMENTS:

1. Author’s statement. According to the author, this bill will direct the CNDRP to collect data on FTD and require hospitals and health care professionals to report cases. FTD is a terminal and incurable neurodegenerative disease, causing impairments to speech, personality, behavior, and movement, and constitutes a major public health concern. FTD represents an estimated 5-15% of dementia cases and is the most common form of dementia for people under 60. It is reported that 75% of physicians in California already use the necessary record-keeping system. This bill will help prioritize FTD so researchers can better identify and treat the FTD community, speeding research into the causes, treatments, and hopefully cures for FTD, as well as informing patients of clinical trials, a critical tool for those dealing with this disease. This bill also extends the sunset date to continue the work on behalf of other previously approved neurodegenerative diseases.
2. CNDRP. The CNDRP, within CDPH’s Chronic Disease Surveillance and Research Branch, was established in 2021 to collect data on the incidence of neurodegenerative disease in the state to better understand its prevalence among different populations and changes over time. The CNDRP has authority to determine which diseases must be reported. Statute requires that ALS cases be reported, and CDPH separately requires reporting for Alzheimer’s disease and multiple sclerosis. According to the CNDRP, the program began collecting data on multiple sclerosis on July 1, 2023, and has expanded reporting requirements to include Alzheimer’s in July of 2025 and ALS in July of 2026. Parkinson’s disease is reported via the Richard Paul Hemann California Parkinson’s Disease Registry, a similar program that predates the CNDRP.

CNDRP data are obtained from patients’ medical records and include their identifying information, demographic data, patient visit information, primary physician information, primary ICD-10 diagnosis code, and disease onset information. CDPH accepts data from registered providers through either manual data entry into a secure web portal or the automated electronic transfer of case files from electronic medical record systems. The data collected by CNDRP are confidential, meaning that detailed data may only be disclosed to researchers who have obtained approval from their institutional review board and have demonstrated their ability to maintain data security, other state neurodegenerative disease registries, federal neurodegenerative disease control agencies, and local health officers. The data can only be used for the stated purpose of their request. Patients and those legally authorized to obtain a patient’s confidential information can also access their data.

1. FTD. According to the National Institute of Neurological Disorders and Stroke, FTD (also known as frontotemporal dementia, frontotemporal disorder, frontotemporal lobar degeneration, or Pick’s disease) is caused by damage to neurons in the frontal and temporal lobes of the brain. Neuronal damage results in progressive atrophy of the lobes, disrupting the functions associated with these regions, such as planning and decision-making, emotional regulation, memory, and language. Depending on what area of the brain is affected, patients may also display difficulty with motor control. Because FTD is progressive, an individual’s symptoms will change over time as more parts of the brain are affected. FTD is diagnosed by neurological and cognitive exams and behavioral evaluations, family history and genetic testing, brain imaging, and laboratory tests that exclude the possibility of Alzheimer’s, but can only be confirmed postmortem.

FTD is usually diagnosed in three different categories: behavioral variant frontotemporal dementia (bvFTD); primary progressive aphasia (PPA); and movement disorders. Patients diagnosed with bvFTD display changes in personality, behavior, and judgment, with or without problems with cognition or memory. Those with PPA have difficulty with speaking, reading, writing, and understanding words. PPA patients often display cognitive symptoms of dementia as the disease progresses, and occasionally display behavioral changes as well. FTD-induced movement disorders include corticobasal syndrome, progressive supranuclear palsy, FTD with parkinsonism, and FTD-ALS. Corticobasal syndrome is characterized by difficulty using hands or arms, sometimes beginning on one side of the body before progressing to both. Those with progressive supranuclear palsy have difficulty walking, balancing, and moving facial muscles, and it is characterized by a fixed stare due to trouble with eye movements. Individuals with FTD with parkinsonism display symptoms similar to Parkinson’s disease, including slowed movement, stiffness, and balance issues. FTD-ALS is a combination of bvFTD and ALS, including ALS symptoms like progressive muscle weakness and muscle jerks or wiggling. The movement disorders may also include symptoms affecting behavior, thinking, and language. According to the Association for Frontotemporal Degeneration, an estimated 50,000-60,000 Americans have FTD. Unlike Alzheimer’s and many other dementias, FTD primarily affects middle-aged individuals. About 60% of diagnoses occur between 45 and 64 years of age, when many are still working and caring for family members. The life expectancy for those with FTD ranges from two to 20 years from the onset of symptoms.

1. Prior legislation. AB 424 (Bryan, Chapter 522, Statutes of 2023) requires the CNDRP to collect information on the incidence and prevalence of ALS.

AB 133 (Committee on Budget, Chapter 143, Statutes of 2021) establishes the CNDRP.

1. Support. The sponsors of this bill, the Association for Frontotemporal Degeneration, along with a coalition of ALS, FTD, and Parkinson’s disease organizations, write that it is their goal to ensure every person living with a neurodegenerative disease is seen, counted, and supported through data-informed public policy and research investment. The interconnectedness of many neurodegenerative diseases means improving data collection for one condition strengthens understanding across the field. They also support extending the sunset date of the CNDRP, describing the program as a vital and cost-effective resource for those working to understand disease impact, appropriately allocate resources, and improve pathways to care. Several supporters highlight that the explicit inclusion of FTD and other dementias within the definition of neurodegenerative disease reflects the current state of the science around the interconnectedness of neurodegenerative diseases and emphasize that comprehensive data collection will better inform research, care, resource allocation, and eventually, outcomes for patients. California Life Sciences writes that the existing registry infrastructure uses electronic medical records and established reporting mechanisms to collect data without creating unnecessary administrative burden.
2. Amendments. The author has agreed to the following amendments:
   1. Clarify that cases of FTD are subject to the reporting requirement:

(b) 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, and frontotemporal degeneration (FTD). 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.

(i) For the purposes of this section, “neurodegenerative disease” includes, but is not limited to, amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, frontotemporal degeneration (FTD), may also include, but need not be limited to, Alzheimer’s disease and other dementias, multiple sclerosis, and Huntington’s disease.

• 1. Extend the sunset date from 2030 to 2032, to ensure CDPH has sufficient time to implement this bill and to allow for more robust data collection.

SUPPORT AND OPPOSITION:

Support: Association for Frontotemporal Degeneration (sponsor)

ALS Association

ALS Network

Biocom California

Bluefield Project

California Life Sciences Association

Cure MAPT FTD

Michael J. Fox Foundation for Parkinson’s Research

Oppose: None Received

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