Section 144-175-1 - PURPOSE AND DEFINITIONSA.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.10-144 C.M.R. ch. 175, § 1