DEPARTMENT OF HEALTH AND HUMAN SERVICES  
BUREAU OF EPIDEMIOLOGY AND POPULATION HEALTH  
LIFECOURSE EPIDEMIOLOGY AND GENOMICS DIVISION  
MANDATORY REPORTING OF AMYOTROPHIC LATERAL SCLEROSIS CASES  
Filed with the secretary of state on May 15, 2025  
These rules become effective immediately after filing with the secretary of state unless  
adopted under section 33, 44, or 45a(9) of the administrative procedures act of 1969, 1969 PA  
306, MCL 24.233, 24.244, or 24.245a. Rules adopted under these sections become effective 7  
days after filing with the secretary of state.  
(By authority conferred on the department of health and human services by sections 2226, 2233,  
and 5111 of the public health code, 1978 PA 368, MCL 333.2226, 333.2233, and 333.5111)  
R 330.101, R 330.102, R 330.103, R 330.104, and R 330.105 are added to the Michigan  
Administrative Code, as follows:  
R 330.101 Definitions.  
Rule 1. (1) As used in these rules:  
(a) “ALS” or “Amyotrophic Lateral Sclerosis” or “Lou Gehrig’s disease” means a uniformly  
fatal disease with the average life span of 2 to 5 years following diagnosis, manifested as a  
progressive neurodegenerative disease.  
(b) “ALS case abstraction form” means the form prescribed by the department to report the  
required reportable information for individuals with ALS and conditions related to ALS.  
(c) “Code” means the public health code, 1978 PA 368, MCL 333.1101 to 333.25211.  
(d) "Conditions related to ALS” means diseases that manifest similarly to ALS, including the  
following:  
(i) Progressive muscular atrophy.  
(ii) Primary lateral sclerosis.  
(iii) Flail arm.  
(iv) Flail leg.  
(e) "Department" means the department of health and human services.  
(f) “Health professional" means an individual licensed under article 15 of the code, MCL  
333.16101 to 333.18838, to work as a physician, a physician's assistant, or a nurse practitioner.  
(g) "Public health investigation" means the collection of medical, epidemiologic, exposure, and  
other information to determine the cause of illness or disability, which is used to determine  
appropriate actions to prevent or mitigate additional illness or disability.  
(h) “Report” means documents or data containing health information provided to the  
department consistent with these rules.  
(2) A term defined in the act has the same meaning when used in these rules.  
R 330.102 Reportable Information.  
Rule 2. (1) Health professionals and health facilities must provide reports in a format that  
ensures the inclusion of the following information, as applicable:  
October 11, 2023  
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(a) If available, all of the following information, with respect to the patient, must be provided:  
(i) Reporting facility name.  
(ii) Reporting facility type or source, including hospital, clinic, or death records.  
(iii) Medical record number.  
(iv) Last and first name and middle initial.  
(v) Birth date.  
(vi) Death date, if applicable.  
(vii) Sex.  
(viii) Race.  
(ix) Ethnicity.  
(x) The primary diagnosis indicating ALS or a condition related to ALS, including the  
diagnostic code.  
(xi) Date of diagnosis.  
(xii) Current residential address.  
(xiii) Telephone number.  
(xiv) Email address.  
(b) Upon receipt of a report, the department may request the collection of the following  
information, in addition to information specified in subdivision (a) of this subrule, if available:  
(i) City, state, and country of birthplace.  
(ii) Location of disease onset, if known.  
(iii) Current occupation.  
(iv) Military veteran status.  
(v) Military branch of service, if applicable.  
(vi) Duration of military service, if applicable.  
(vii) Location of military service, if applicable.  
(viii) Date of symptoms onset.  
(ix) Family history of ALS.  
(x) Family history of dementia.  
(xi) Family history of psychiatric illness such as depression, bipolar disorder, or  
schizophrenia.  
(xii) Secondary neurological diagnosis such as frontotemporal dementia, if applicable.  
(xiii) Site of onset of progressive weakness if known, including, but not limited to the  
following:  
(A) Bulbar.  
(B) Truncal.  
(C) Generalized.  
(D) Respiratory.  
(E) Upper limb.  
(F) Lower limb.  
(c) Name, address, telephone number, email address, and other contact information of the  
health professional who diagnosed or treated the patient.  
(d) Name, address, telephone number, email address, and other contact information of the  
reporting health professional or health facility.  
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(2) Reports submitted in electronic or physical format must meet data quality, format, and  
timeliness standards prescribed by the department.  
R 330.103 Reporting responsibilities.  
Rule 3. (1) Following the effective date of these rules, health professionals and health facilities  
must submit the reports, as described in R 330.102, within 3 months of diagnosis.  
(2) Health professionals and health facilities may be asked by the department to provide follow-  
up information on individuals for the variables in R 330.102(1)(b) within 6 months after the  
follow-up.  
(3) Health professionals and health facilities must submit the report required in R 330.102 when  
requested by the department. Additional reports may be made by health professionals and health  
facilities in the absence of a departmental request.  
(4) Nothing in this rule relieves a health professional or health facility from reporting to another  
entity as required by state, federal, or local statutes or regulations or in accordance with accepted  
standard of practice, except that reporting in compliance with this rule satisfies the reporting  
requirements of the code.  
R 330.104 Investigation and quality assurance.  
Rule 4. (1) The department shall consult with local health departments in the development of  
procedures for processing ALS reports and conducting follow-up investigations to ensure an  
efficient, non-duplicative, and effective public health response.  
(2) The department may make requests for individual medical and epidemiologic information to  
validate the completeness and accuracy of reports. Individuals or organizations that receive such  
requests must provide the information sought to the department promptly, no later than 30 days  
after the request is made.  
R 330.105 Confidentiality of reports.  
Rule 5. (1) To the maximum extent allowed by law, reports and health information collected  
under these rules are not public records and are exempt from disclosure under the freedom of  
information act, 1976 PA 442, MCL 15.231 to 15.246.  
(2) Reports and any health information collected under these rules are medical records for the  
purpose of section 13(1)(l) of the freedom of information act, 1976 PA 442, MCL 15.243.  
(3) Medical and epidemiological information that identifies an individual and that is gathered in  
connection with an investigation is confidential and is not open to public inspection, except as  
provided in subrule (5) of this rule. All individuals in possession of reports and records collected  
under these rules shall maintain the confidentiality of reports, records, and data pertaining to  
testing, diagnosis, care, treatment, reporting, and research, and shall not reveal the identity of any  
individual.  
(4) Medical and epidemiological information that is released to a legislative body must not  
contain information that identifies a specific individual.  
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(5) Information collected under this rule must be used for epidemiologic investigation and  
evaluation and the department and local health departments may release reports or information  
under any of the following conditions:  
(a) If the department has received written consent from the individual, or from the individual’s  
legal guardian.  
(b) As necessary for the department to carry out its duties under sections 2221(2) and 2637(1)  
of the code, MCL 333.2221 and 333.2637.  
(c) If necessary for the purpose of research designed to contribute to generalizable knowledge,  
with documented approval by the department’s institutional review board.  
;