§ 174. Confidentiality
(a)(1) All identifying information regarding an individual patient or health care provider is exempt from public inspection and copying under the Public Records Act and shall be kept confidential.
(2) Notwithstanding subdivision (1) of this subsection, the Commissioner may enter into data sharing and protection agreements with researchers or state, regional, or national amyotrophic lateral sclerosis registries for bidirectional data exchange, provided access under such agreements is consistent with the privacy, security, and disclosure protections in this chapter. In the case of researchers, the Commissioner shall also first obtain written evidence of the approval of an institutional review board or privacy board in accordance with 45 C.F.R. § 164.512(i)(1)(i)(A) and (B). The Commissioner shall disclose the minimum information necessary to accomplish a specified research purpose.
(b) The Department may disclose aggregated and deidentified information from the registry. (Added 2021, No. 149 (Adj. Sess.), § 1, eff. July 1, 2023; amended 2025, No. 116 (Adj. Sess.), § 3, eff. July 1, 2026.)