WeVote
Log In

Bill

Bill

S 6413

Relates to establishing a state amyotrophic lateral sclerosis (ALS) and motor neuron disease (MND) registry

2025 Regular Session Introduced by Pat Fahy and 1 co-sponsor

Bill S 6413 establishes a state registry for ALS and MND patients, enhancing data collection to improve patient care, research, and healthcare strategies.

SUBSTITUTED BY A7845
0
WeVote Research Nonpartisan
Bill Summary · S 6413

Summary of Bill S 6413: Establishing a State ALS and MND Registry

Purpose and Intent

Bill S 6413 aims to establish a comprehensive state registry for individuals diagnosed with amyotrophic lateral sclerosis (ALS) and motor neuron diseases (MND). The primary intent of this legislation is to enhance the understanding of these conditions through improved data collection and analysis, ultimately leading to better patient care, research opportunities, and public health strategies.

Key Provisions

  • Registry Creation: The bill mandates the creation of a state registry specifically for ALS and MND patients. This registry will collect essential health data, demographic information, and treatment histories.
  • Data Utilization: The information gathered will be used to facilitate research, track disease progression, and improve healthcare services for affected individuals.
  • Privacy Protections: The bill includes provisions to ensure the confidentiality and privacy of individuals registered in the system, adhering to applicable health information privacy laws.
  • Collaboration with Health Departments: The bill encourages collaboration between state health departments, research institutions, and healthcare providers to ensure comprehensive data collection and utilization.

Affected Parties

  • Patients: Individuals diagnosed with ALS and MND will be directly impacted, as the registry aims to provide better tracking of their conditions and improve access to resources.
  • Healthcare Providers: Medical professionals will benefit from enhanced data that can inform treatment protocols and patient management strategies.
  • Researchers: The establishment of the registry will provide researchers with valuable data to study ALS and MND, potentially leading to breakthroughs in treatment and understanding of these diseases.

Legislative Timeline

  • Introduced: March 13, 2025
  • Referred to Health Committee: March 13, 2025
  • Reported and Committed to Finance: May 28, 2025
  • Committee Discharged and Committed to Rules: June 4, 2025
  • Ordered to Third Reading: June 4, 2025
  • Substituted by A7845: June 10, 2025

Related Bills

  • A 7845: This bill serves as a companion to S 6413 and may contain similar or complementary provisions regarding the establishment of the ALS and MND registry.

Conclusion

Bill S 6413 represents a significant step towards improving the understanding and management of ALS and MND within the state. By establishing a dedicated registry, the bill aims to enhance patient care and support ongoing research efforts, ultimately benefiting those affected by these challenging conditions.

Compiled from official sources — confirm details with the bill’s official record.

Sign in to ask a question.