§ 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.)