Section 840.220 Case Surveillance of Young Children

a)         Facilities required to provide data:

1)         Hospitals;

2)         Prenatal and obstetric centers;

3)         Specialty health clinics that treat or provide services to children with birth defects;

4)         Genetics centers;

5)         Laboratories, including cytogenetic, prenatal diagnostic and metabolic; and

6)         Health care providers who provide prenatal or pediatric care or treat young children with a birth defect diagnosis.

b)         Provision of data by cytogenetic laboratories and genetic clinics:

1)         All cytogenetic laboratories and genetic clinics shall report abnormal cytogenetic test results for prenatal and postnatal testing. Negative results or normal results are not reported to the Department.

2)         The cytogenetic laboratories and genetic clinics shall submit:

A)        Patient's name (first and last);

B)        Date of birth;

C)        Residential address, if available, including street address, city, county, state and postal code;

D)        Unique identification number assigned by the submitting facility or health care provider;

E)        Name of the facility or health care provider submitting the test;

F)         Address of the facility or health care provider submitting the test;

G)        Test results; and

H)        Date of the test; and

I)         Type of test.

3)         The test results shall be sent to the Department within seven days after the testing is complete.

c)         Provision of data by other medical facilities:

1)         Prenatal and obstetric centers; specialty health clinics that treat or provide services to children with birth defects; genetics centers; laboratories, including cytogenetic, prenatal diagnostic and metabolic; and health care providers who provide prenatal or pediatric care or treat young children who have birth defects shall provide data about prenatally diagnosed birth defects and birth defects in young children up to two years of age.

2)         Upon the request of the Department, the facilities listed in subsections (a)(2)-(5) shall provide birth defects surveillance information to the Department.

d)         Availability of information for birth defect surveillance of young children:

1)         All facilities listed in subsection (a) shall make medical records of mothers and children having a case condition (see Section 840.200) or a risk factor for a case condition available to the Department.  The medical records will be reviewed by APORS staff to ascertain birth defect cases and collect pertinent data.

2)         The facilities shall make electronic medical records of children having a case condition diagnosis or a risk factor for a birth defect available to the Department through remote computer access.

(Source:  Amended at 46 Ill. Reg. 2971, effective February 1, 2022)