Iowa Admin. Code r. 641-4.6 - [Effective 8/1/2025] Iowa registry for congenital and inherited disorders (IRCID)
This program provides active statewide surveillance for congenital and inherited conditions and disorders. These may include birth defects, neuromuscular disorders, metabolic disorders, and all stillbirths. The program also may conduct active statewide surveillance of live births without a reportable congenital or inherited condition or disorder to serve as controls for epidemiological surveys. Surveillance activities for specific congenital and inherited conditions and disorders and maternal and congenital infections will be conducted for the period of time that adequate financial support is available.
A reportable congenital or inherited condition or disorder occurring in a miscarriage or pregnancy may be included in the IRCID.
(1)
Surveillance policy.
a. Congenital conditions and disorders,
including birth defects, occurring in Iowa are reportable conditions, and
records will be abstracted pursuant to rule
641-1.3 (139A) and maintained in
the IRCID. Congenital conditions and disorders surveillance will be performed
in order to determine the occurrence and trends of such conditions and
disorders, to determine co-occurring conditions and treatments through annual
follow-up abstraction, to conduct thorough and complete epidemiological surveys
to identify environmental and genetic risk factors for congenital conditions
and disorders, to contribute to prevention strategies, and to assist in the
planning for and provision of services to children with congenital conditions
and disorders and their families.
b. Records for neuromuscular disorders will
be abstracted pursuant to rule
641-1.3 (139A) and maintained in
the IRCID. Neuromuscular disorders surveillance for individuals of all ages
shall be performed to determine the occurrence and trends of the selected
neuromuscular disorders, to determine cooccurring conditions and treatments
through annual follow-up abstraction, to conduct thorough and complete
epidemiological surveys through annual long-term follow-up, and to assist in
the planning for and provision of services to individuals with selected
neuromuscular disorders and their families.
c. Stillbirths occurring in Iowa are
reportable conditions, and records of these stillbirths will be abstracted
pursuant to rule 641-1.3 (139A) and maintained in
the IRCID. Stillbirth surveillance will be performed to determine the
occurrence and trends of stillbirths, to conduct thorough and complete
epidemiological surveys to identify environmental and genetic risk factors for
stillbirths, and to assist in the planning for and provision of services to
prevent stillbirths.
(2)
IRCID activities.
a. The
department will establish an agreement with the University of Iowa to implement
the activities of the IRCID.
b. The
IRCID will use the birth defects, neuromuscular disorders, and stillbirth
coding schemes developed by the Centers for Disease Control and Prevention
(CDC).
c. The IRCID staff will
review hospital records, clinical charts, physician's records, vital records,
prenatal records, and fetal death evaluation protocols pursuant to rule
641-1.3 (139A), information from
the INSP, RGCS, NMP, and the IMPSP, and any other information that the IRCID
deems necessary and appropriate for congenital and inherited conditions and
disorders surveillance.
(3)
Department
responsibility.
a. When a live
infant's medical records are ascertained by the IRCID, the department or its
designee will inform the parent or legal guardian by letter that this
information has been collected and provide the parent or guardian with
information about services for which the child and family may be
eligible.
b. The department and the
IRCID will annually release aggregate medical and epidemiological information
to medical personnel and appropriate state and local agencies for the planning
and monitoring of services for children with congenital or inherited conditions
and disorders and their families.
(4)
Confidentiality and disclosure of
information. Reports, records, and other information collected by or
provided to the IRCID relating to a person known to have or suspected of having
a congenital or inherited condition or disorder are confidential records
pursuant to Iowa Code sections
22.7 and
136A.7.
a. Personnel of the IRCID and the department
shall maintain the confidentiality of all information and records used in the
review and analysis of congenital or inherited conditions and disorders,
including information that is confidential under Iowa Code chapter 22 or any
other provisions of state law.
b.
IRCID staff are authorized pursuant to rule
641-1.3 (139A) to gather all
information relevant to the review and analysis of congenital or inherited
conditions and disorders. IRCID staff are permitted to review hospital records,
clinical charts, physician's records, vital records, and prenatal records,
information from the INSP, RGCS, NMP, and IMPSP and any other information the
IRCID deems necessary and appropriate for live births without a reportable
congenital or inherited condition and disorder to serve as controls for
epidemiological surveys.
c. No
individual or organization providing information to the IRCID in accordance
with this rule shall be deemed or held liable for divulging confidential
information.
(5)
Access to information in the IRCID. The IRCID and the
department shall not release confidential information except to the following,
under the following conditions:
a. The parent
or guardian of an infant or child for whom the report is made and who can
demonstrate that the parent or guardian has received the notification
letter.
b. An Early ACCESS service
coordinator or an agency under contract with the department to administer the
children with special health care needs program, upon receipt of written
consent from the parent or guardian of the infant or child.
c. A local health care provider, upon receipt
of written consent from the parent or guardian of the infant or
child.
d. A representative of a
federal agency, to the extent that the information is necessary to perform a
legally authorized function of that agency or the department. The information
provided shall not include the personal identifiers of an infant or child with
a reportable congenital or inherited condition or disorder.
e. Researchers. All proposals for research
using the IRCID data to be conducted by persons other than program staff shall
first be submitted to and accepted by the researcher's institutional review
board. Proposals shall then be reviewed and approved by the department before
research can commence.
f. A
representative of a state agency, to the extent that the information is
necessary to perform a legally authorized function of that agency or the
department. The state agency will be subject to confidentiality regulations
that are the same as or more stringent than those in the state of
Iowa.
Notes
State regulations are updated quarterly; we currently have two versions available. Below is a comparison between our most recent version and the prior quarterly release. More comparison features will be added as we have more versions to compare.
This program provides comprehensive services statewide for individuals and families with neuromuscular disorders through outreach clinics and statewide, active surveillance for selected neuromuscular disorders.
(1) Provision of comprehensive services. The department shall contract with the department of pediatrics at the University of Iowa to provide neuromuscular health care, case management and education outreach services for individuals and families within Iowa. The contractor shall provide annual reports to the department as specified in the contract.
(2) Clinical services. The services provided may include, but are not limited to: diagnostic evaluations, confirmatory testing, physical therapy, consultation by board-certified neurologists, genetic counseling, medical case management, supportive services and referral to appropriate agencies.
(3) The University of Iowa Hospitals and Clinics under the control of the state board of regents shall not receive indirect costs from state funds appropriated for this program.