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Bill

S 4213

Requires DOH to develop and maintain centralized neurodegenerative disorders database.

2026-2027 Regular Session Introduced by Raj Mukherji

Creates a centralized NJ Department of Health database to collect, store, and secure neurodegenerative disorder data for surveillance, research, and improved care coordination.

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Bill Summary · S 4213

Summary of Bill S4213 (New Jersey, 222nd Session)

Title

Requires the Department of Health (DOH) to develop and maintain a centralized neurodegenerative disorders database.

Purpose and intent

  • Establish, operate, and sustain a centralized database to collect and store information related to neurodegenerative disorders.
  • Facilitate improved public health surveillance, research, and coordination of care for individuals with neurodegenerative conditions.

Key provisions and changes

  • ** creation of a centralized database**:

    • The DOH must develop and maintain a comprehensive database focused on neurodegenerative disorders.
    • The database is intended to consolidate relevant data to support monitoring, research, and public health decision-making.

  • Data elements and collection:

    • The bill outlines the types of information to be collected, which may include epidemiological data, patient demographics, clinical features, treatment information, outcomes, and other data necessary for surveillance and research (exact fields would be specified in the bill’s text).
    • Provisions typically cover data submission requirements from healthcare providers, laboratories, and other entities, as well as standards for data quality and interoperability.

  • Privacy, security, and compliance:

    • The database must be designed to protect patient privacy and comply with applicable state and federal privacy laws.
    • Measures likely include data de-identification, access controls, and secure data transmission and storage.

  • Accessibility and use:

    • Specified roles for who may access the data (e.g., state health officials, researchers, approved public health partners) and for what purposes (surveillance, research, program evaluation).
    • Procedures for data requests, approvals, and potential data-sharing with other state agencies or authorized researchers.

  • Reporting and oversight:

    • The bill may require regular reporting on the database’s status, data quality, and public health findings.
    • An oversight mechanism (e.g., a advisory panel or board) could be established to guide governance, privacy, and use of the data.

  • Funding and implementation timeline:

    • The bill may authorize funding or specify budgetary considerations for development, maintenance, and staffing.
    • Timelines for implementation phases (e.g., development, pilot, full deployment) are typically outlined, with milestones for a phased roll-out.

Who would be affected

  • New Jersey Department of Health (DOH): Responsible for developing, maintaining, and governing the database.
  • Healthcare providers, laboratories, and other data submitters: Subject to data reporting requirements and standards.
  • Researchers and public health partners: Granted access under defined protocols to utilize data for surveillance and study purposes.
  • Individuals with neurodegenerative disorders: Beneficiaries of improved public health monitoring, potential for better care coordination and outcomes, while privacy protections apply.

Procedural and timeline aspects

  • The bill sets a framework for the creation and operation of the database, including potential phased implementation.
  • There may be specified enrollment, data submission deadlines, and periodic review requirements.
  • Funding authorization and budget development are tied to implementation milestones and ongoing maintenance.

Notes and considerations

  • The summary reflects typical structure for a centralized health database bill; exact data elements, privacy safeguards, access rules, and timelines would be detailed in the bill text.
  • Co-sponsor: Raj Mukherji.

If you’d like, I can tailor this summary to emphasize particular stakeholders (patients, clinicians, researchers) or extract the exact data fields and timelines once the bill’s full text is available.

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

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