An Act To Create the Amyotrophic Lateral Sclerosis Incidence Registry
Maine Legislature, Session 130, LD 2007
Committee: Health and Human Services
Sponsors: CLAXTON, OSHER

Legislative Document
No. 2007
S.P. 724
In Senate, March 9, 2022
An Act To Create the Amyotrophic Lateral Sclerosis Incidence 
Registry
Received by the Secretary of the Senate on March 3, 2022.  Referred to the Committee on 
Health and Human Services pursuant to Joint Rule 308.2 and ordered printed.
DAREK M. GRANT
Secretary of the Senate
Presented by Senator CLAXTON of Androscoggin.  (GOVERNOR'S BILL)
Cosponsored by Representative OSHER of Orono.
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Be it enacted by the People of the State of Maine as follows:
Sec. 1.  22 MRSA c. 255-A is enacted to read:
CHAPTER 255-A
AMYOTROPHIC LATERAL SCLEROSIS
§1411.  Registry established
The Maine Center for Disease Control and Prevention shall establish, maintain and 
operate a statewide amyotrophic lateral sclerosis incidence registry, referred to in this 
chapter as "the registry."
§1412.  Duty of health care providers
A physician, surgeon, nurse practitioner, physician assistant or other health care 
practitioner and a hospital or other health care facility that screens for, diagnoses or 
provides therapeutic services to patients with amyotrophic lateral sclerosis shall report to 
the department all persons diagnosed as having amyotrophic lateral sclerosis no later than 
months from the date of diagnosis.  The report must include, but is not limited to, 
information on each person's usual occupation and industry of employment and other 
elements determined by rule to be appropriate.
§1413.  Confidentiality
Information that directly or indirectly identifies individual persons contained within 
the registry is confidential and protected by applicable law, including section 42, 
subsections 2 and 5 and chapters 401 and 857.  Information within the registry may be 
disclosed only in aggregated, de-identified form and in a manner consistent with Maine 
Center for Disease Control and Prevention confidentiality policies.  The department may 
disclose the minimum information necessary to accomplish a specified research purpose 
only upon successful completion of the research disclosure approval process established 
by the department and as permitted under applicable human subject research protections, 
state and federal laws and the department's confidentiality policies and processes.
§1414.  Annual report
The department shall prepare and submit to the Governor annual reports containing 
statewide prevalence and incidence estimates of amyotrophic lateral sclerosis, including 
any trends occurring over time across the State.  The reports may not contain any 
information that directly or indirectly identifies individual persons.
§1415.  Rules
The department shall adopt rules to implement this chapter, including, but not limited 
to, rules governing the operation of the registry, reporting to the registry and data release 
protocols.  Rules adopted pursuant to this section are routine technical rules as defined in 
Title 5, chapter 375, subchapter 2-A.
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SUMMARY
This bill requires health care practitioners and health care facilities to report diagnoses 
of amyotrophic lateral sclerosis to the Department of Health and Human Services in order 
for the Maine Center for Disease Control and Prevention to create and maintain a statewide 
registry for surveillance of the disease in the State.  The bill provides confidentiality 
protections regarding information that directly or indirectly identifies individual persons.  
The bill requires the department to complete annual reports containing statewide 
prevalence and incidence estimates of amyotrophic lateral sclerosis, including any trends 
occurring over time across the State.  The bill also requires the department to adopt routine 
technical rules to implement the registry.