The Vermont Statutes Online

Title 18: Health

Chapter 004A: Amyotrophic Lateral Sclerosis Registry

• § 171. Definitions

  As used in this chapter:

  (1) “Amyotrophic lateral sclerosis” or “ALS” means a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord.

  (2) “Health care provider” means a person, partnership, corporation, facility, or institution licensed or certified or authorized by law to provide professional health care service in this State to an individual during that individual’s medical care, treatment, or confinement.

  (3) “Registry” means the statewide amyotrophic lateral sclerosis incidence registry. (Added 2021, No. 149 (Adj. Sess.), § 1, eff. July 1, 2023.)

• § 172. Registry established

  The Commissioner shall establish, maintain, and operate a statewide amyotrophic lateral sclerosis incidence registry. (Added 2021, No. 149 (Adj. Sess.), § 1, eff. July 1, 2023.)

• § 173. Duty of health care providers

  A health care provider that screens for, diagnoses, or provides therapeutic services to patients with amyotrophic lateral sclerosis shall report to the Department all individuals diagnosed as having amyotrophic lateral sclerosis not later than six months from the date of diagnosis. The report shall include information on each individual’s usual occupation and industry of employment and other elements determined by rule to be appropriate. (Added 2021, No. 149 (Adj. Sess.), § 1, eff. July 1, 2023.)

• § 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 evidence of the approval of their academic committee for the protection of human subjects established in accordance with 45 C.F.R. Part 46. 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.)

• § 175. Annual report

  Annually, on or before January 15, the Department shall submit a written report to the Governor, the House Committee on Human Services, and the Senate Committee on Health and Welfare containing the statewide prevalence and incidence estimates of amyotrophic lateral sclerosis, including any trends occurring over time across the State. Reports shall not contain information that directly or indirectly identifies an individual patient or health care provider. (Added 2021, No. 149 (Adj. Sess.), § 1, eff. July 1, 2023.)

• § 176. Rulemaking

  The Commissioner shall adopt rules pursuant to 3 V.S.A. chapter 25 to implement this chapter, including rules to govern the operation of the registry, data reported to the registry, and data release protocols. (Added 2021, No. 149 (Adj. Sess.), § 1, eff. July 1, 2023.)

• § 177. Liability

  (a) No action for damages arising from the disclosure of confidential or privileged information shall be maintained against any person, or the employer or employee of any person, who participates in good faith in the reporting of amyotrophic lateral sclerosis registry data or data for amyotrophic lateral sclerosis morbidity or mortality studies in accordance with this chapter.

  (b) No license of a health care provider shall be denied, suspended, or revoked for the good faith disclosure of confidential or privileged information in the reporting of amyotrophic lateral sclerosis registry data or data for amyotrophic lateral sclerosis morbidity or mortality studies in accordance with this chapter.

  (c) Nothing in this section shall be construed to apply to the unauthorized disclosure of confidential or privileged information when such disclosure is due to gross negligence or willful misconduct. (Added 2021, No. 149 (Adj. Sess.), § 1, eff. July 1, 2023.)