Section 144-175-3 - DATA SHARING AND RELEASEThe Department may require signed contracts, a confidentiality statement, an interjurisdictional exchange of vital records agreement or other agreement, and/or evidence of direct and legitimate interest prior to sharing Registry data with an applicant conducting research. A Memorandum of Understanding, letter of support, or general email exchange is not sufficient foundation for the Department to disclose confidential identifiable information for research purposes.
A.Confidentiality. Information within the Registry may be disclosed in aggregated, de-identified form. Registry data that identifies a reportable case directly or indirectly is confidential and may be released only in accordance with 22 MRS §1413 and this rule.B.Registry data sharing. The Department may establish data sharing and protection agreements with state, regional and national ALS registries for bidirectional data exchange. Data sharing agreements provide details that explain how the data may be shared and used.C.Registry data reporting. The Department may submit Registry data elements collected under this rule to the Agency for Toxic Substances and Disease Registry (ATSDR), which is part of the U.S. Centers for Disease Control and Prevention (CDC) and which operates and maintains the National ALS Registry.10-144 C.M.R. ch. 175, § 3