Code of Maine Rules
10 - DEPARTMENT OF HEALTH AND HUMAN SERVICES
144 - DEPARTMENT OF HEALTH AND HUMAN SERVICES - GENERAL
Chapter 175 - AMYOTROPHIC LATERAL SCLEROSIS INCIDENCE REGISTRY RULE
Section 144-175-1 - PURPOSE AND DEFINITIONS
Universal Citation: 10 ME Code Rules ยง 144-175-1
Current through 2024-38, September 18, 2024
A. Purpose. This rule establishes reporting requirements for health care practitioners, hospitals and other health care facilities that screen for, diagnose, or treat patients with amyotrophic lateral sclerosis and includes provisions specific to data sharing with external registries and researchers.
B. Definitions. As used in this rule, the following terms have the following meanings, unless otherwise specified.
1.
Amyotrophic Lateral Sclerosis
means the rare neurological disease that affects motor neurons or nerve cells
in the brain and spinal cord that control voluntary muscle movement, commonly
referred to as ALS or Lou Gehrig's Disease.
2.
Amyotrophic Lateral Sclerosis
Incidence Registry (Registry) means Maine's statewide population-based
amyotrophic lateral sclerosis surveillance system established within the
Department's Office of Data, Research, and Vital Statistics (DRVS).
3.
Confidentiality statement
means an agreement between an applicant and the Department of Health and Human
Services - Maine Center for Disease Control and Prevention, Office of Data,
Research, and Vital Statistics that data received pursuant to this rule will
not be used in any manner other than for the administrative or statistical
research purposes specified in the application.
4.
Confirmatory diagnosis of
amyotrophic lateral sclerosis (ALS) means a diagnosis of the neurodegenerative
disease based on a series of tests (such as magnetic resonance imaging) of the
neck, head and lower spine; an EMG (electromyography) which tests nerve
conduction; and a series of blood tests, urine tests, genetic tests, or a
lumbar puncture.
5.
Department means the Maine Department of Health and Human Services
- Maine Center for Disease Control and Prevention.
6.
Health care facility means a
location that provides diagnostic or treatment services such as hospitals,
public or private healthcare office practices, clinics, outpatient care
centers, and specialized care centers.
7.
Health care practitioner
means, as described in
22 MRS
§2084(4), an individual
who screens for or diagnoses ALS or provides ALS-related therapeutic services.
Under this rule, "health care practitioner" does not include practitioners
providing therapeutic services solely by spiritual means.
8.
Reportable case means a
patient with a confirmatory diagnosis of ALS.
Disclaimer: These regulations may not be the most recent version. Maine may have more current or accurate information. We make no warranties or guarantees about the accuracy, completeness, or adequacy of the information contained on this site or the information linked to on the state site. Please check official sources.
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