Amyotrophic Lateral Sclerosis Incidence Registry Rule (new)

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Maine law (22 MRS  1411) requires the Department of Health and Human Services - Maine Center for Disease Control and Prevention to establish, maintain and operate a statewide amyotrophic lateral sclerosis (ALS) incidence registry. This proposed rule is to govern data collection and data release related to reportable cases of ALS for the purpose of the registry, outlining patient confidentiality and establishing requirements for annual reporting to the Department. Healthcare providers must submit required data in the form and manner prescribed by the Department no later than six months from the date of diagnosis, unless otherwise directed. Required data includes the date of diagnosis, residential and occupational history, and other information determined helpful in informing epidemiologic studies on the causes of ALS, evaluating trends over time and in identifying geographic and demographic patterns. Registry data disclosure and release must be in accordance with this rule and State and federal confidentiality laws and policies. Prior to release, the Department may require a data-sharing agreement and/or a signed confidentiality statement, and Institutional Review Board (IRB) approval or exemption determination letter. 

Office: Maine CDC

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