Date posted:
Attachment(s):
The adoption of Maine’s Amyotrophic Lateral Sclerosis Incidence Registry Rule, a new rule administered by the Maine Center for Disease Control and Prevention, establishes data collection requirements and data release protocols specific to reportable cases of patients diagnosed with amyotrophic lateral sclerosis (ALS). For the purpose of the statewide ALS registry required by 22 MRS Sec. 1411, this rule directs healthcare practitioners and facilities that screen for, diagnose or provide therapeutic services to patients with ALS to submit, in the form and manner prescribed by the Department, information including, but not limited to, patient employment information as specified in the law, patient demographics and diagnostic information included in the patient’s medical record, and residential history and known risk factors reported by the patient. ALS registry data release for approved research, inclusion in the national registry or other legitimate purpose must be in accordance with this rule. The Department may contact the reporter for information concerning a reportable case. The Department added facsimile as an additional secure method for submitting the ALS report form, based on public comment, as well as minor changes to format to the final adopted rule.
Adopted
Office: Maine CDC
Routine technical
Email: bridget.danis@maine.gov
Comment deadline:
Effective date:
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