§ 991. Establishment of Birth Information Network
(a) The Commissioner of Health shall establish a statewide birth information network designed
to identify newborns who have specified health conditions that may respond to early
intervention and treatment by the health care system.
(b) The Department of Health is authorized to collect information for the Birth Information
Network for the purpose of preventing and controlling disease, injury, and disability.
The Commissioner, in collaboration with appropriate partners, shall coordinate existing
data systems and records to enhance the Network’s comprehensiveness and effectiveness,
including:
(1) vital records (birth, death, and fetal death certificates);
(2) the children with special health needs database;
(3) newborn metabolic screening;
(4) a voluntary developmental screening test;
(5) universal newborn hearing screening;
(6) the Hearing Outreach Program;
(7) the cancer registry;
(8) the lead screening registry;
(9) the immunization registry;
(10) the special supplemental nutrition program for women, infants, and children;
(11) the Medicaid claims database;
(12) the hospital discharge data system;
(13) health records, including discharge summaries, disease indexes, nursery logs, pediatric
logs, and neonatal intensive care unit logs, from hospitals, outpatient specialty
clinics, genetics clinics, and cytogenetics laboratories; and
(14) the Vermont Health Care Claims Uniform Reporting and Evaluation System.
(c) [Repealed.]
(d) The Network shall provide information on public health activities, such as surveillance,
assessment, and planning for interventions to improve the health and quality of life
for Vermont’s infants and children and their families. This information shall be used
for improving health care delivery systems and outreach and referral services for
families with children with special health needs and for determining measures that
can be taken to prevent further medical conditions.
(e) The Network shall be designed to follow infants and children up to one year of age
with the 40 medical conditions listed in the matrix developed by the Birth Information
Council that have been selected as identifiable via existing Vermont data systems
and are considered to be representative of the most significant health conditions
of newborns in Vermont, including conditions relating to upper and lower limbs. The
Department of Health is authorized to amend the list of medical conditions through
rulemaking pursuant to 3 V.S.A. chapter 25 to meet the objectives of this section.
(f) The Network’s data system shall be designed to coordinate with the data systems of
other states so that data on out-of-state births to Vermont residents will be captured
for vital records, case ascertainment, and follow-up services. The Commissioner of
Health is authorized to enter into interstate agreements containing the necessary
conditions for information transmission.
(g) The Commissioner of Health shall compile information every two years to document possible
links between environmental and chemical exposure with the special health conditions
of Vermont’s infants and children.
(h) The Department of Health shall develop a form that contains a description of the Birth
Information Network and the purpose of the Network. The form shall include a statement
that the parent or guardian of a child may contact the Department of Health and have
the child’s personally identifying information removed from the Network. (Added 2003, No. 32, § 2; amended 2011, No. 35, § 3, eff. May 18, 2011; 2013, No. 131 (Adj. Sess.), § 119; 2015, No. 23, § 152; 2015, No. 152 (Adj. Sess.), § 13; 2017, No. 46, § 37, eff. July 1, 2019; 2023, No. 53, § 7, eff. June 8, 2023.)