Each occurrence of a congenital and inherited disorder that is
diagnosed or treated in an Iowa resident or occurs in a nonresident who is
diagnosed or treated in an Iowa facility is a reportable condition, and records
of these congenital and inherited disorders shall be abstracted and maintained
in a central registry. Congenital and inherited disorder surveillance shall be
performed in order to determine the occurrence and trends of congenital and
inherited disorders, to conduct thorough and complete epidemiological surveys,
to assist in the planning for and provision of services to children with
congenital and inherited disorders and their families, and to identify
environmental and genetic risk factors for congenital and inherited
disorders.
(1)
Who is required
to report. Occurrences of reportable congenital and inherited
disorders shall be reported by registrars employed by the Iowa Registry for
Congenital and Inherited Disorders, registrars employed by health care
facilities, and health care providers involved in the diagnosis, care, or
treatment of individuals with reportable congenital and inherited
disorders.
(2)
What to
report. The content of the reports shall include, but not be limited
to, follow-up data and demographic, diagnostic, treatment, and other medical
information. Tissue samples may also be submitted under the authority of this
rule.
(3)
How to
report.
a. The department has
delegated to the Iowa Registry for Congenital and Inherited Disorders the
responsibility for collecting these data through review of records from
hospitals, radiation treatment centers, outpatient surgical facilities,
oncology clinics, pathology laboratories, and physician offices.
b. Prior to collecting the data from an
office or facility, the Iowa Registry for Congenital and Inherited Disorders
shall work with the office or facility to develop a process for abstracting
records.
(4)
Fetal death (stillbirth). Each occurrence of a fetal death
that occurs in an Iowa resident or occurs in a nonresident who is identified in
an Iowa facility is a reportable condition.
a.
Providers shall complete the fetal death certificate supplied by the
department.
b. Fetal death
certificates are to be filed with the department's bureau of vital records
within seven days.