Section 840.220 Birth Defect 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)         Physicians who provide prenatal or pediatric care or treat young children who have been discharged with a birth defect diagnosis.

b)         Provision of data by hospitals:

1)         All hospitals licensed by the State of Illinois shall provide to the APORS program reports of children up to two years of age who have been diagnosed with a birth defect and discharged from that hospital with a birth defect diagnosis.

A)        Hospitals with perinatal designation levels of III and II (see Regionalized Perinatal Health Care Code, 77 Ill. Adm. Code 640.40) shall provide quarterly reports to the Department.  The hospitals shall generate electronic reports from computerized hospital discharge data sets.  The electronic reports must be in the standard format required by the Department.

B)        Hospitals with a perinatal designation level of I (see Regionalized Perinatal Health Care Code, 77 Ill. Adm. Code 640.40) shall provide annual reports to the Department.  The hospitals shall generate electronic reports from computerized hospital discharge data sets.  The electronic reports must be in the standard format required by the Department.  If a hospital is technically unable to generate an electronic report, a paper report will be acceptable.

C)        Children's hospitals shall provide quarterly reports to the Department.  The hospitals shall generate electronic reports from computerized hospital discharge data sets.  The electronic reports must be in the standard format required by the Department.

c)         Provision of data by cytogenetic laboratories and prenatal diagnostic clinics:

1)         All cytogenetic laboratories and prenatal diagnostic clinics shall report prenatal birth defect diagnoses of genetic origin to the Department.  Negative results or normal results are not reported to the Department.

2)         The cytogenetic laboratories and prenatal diagnostic clinics shall send:

A)        Mother'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 physician;

E)         Name of the facility or physician submitting the test;

F)         Address of the facility or physician submitting the test;

G)        Test results;

H)        Date of test; and

I)          Date of the laboratory results.

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

d)         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 physicians 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 Section 840.220(a)(2)-(6) shall provide birth defects surveillance information to the Department.

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

1)         All hospitals listed in Section 840.220(b) shall make medical records of children having a birth defect diagnosis or a risk factor for a birth defect 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 medical records of the affected mothers and children available to the Department.  The medical records will be reviewed by APORS staff to ascertain birth defect cases and collect pertinent data.

(Source:  Added at 31 Ill. Reg. 12207, effective August 2, 2007)