§ 22 §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 in aggregated, de‑identified form. Information that directly or indirectly identifies individual persons contained within the registry may be disclosed only in a manner consistent with applicable state and federal confidentiality laws and policies. The department may establish data sharing and protection agreements with state, regional and national amyotrophic lateral sclerosis registries for bidirectional data exchange, in a manner consistent with applicable state and federal confidentiality laws and 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.

Legislative History

PL 2021, c. 613, §1 (NEW).