Downloadable Registry Reporting Forms

State of California law (California Code of Regulations, Title 17, Sections 6531 & 6532) requires that neural tube defects (NTDs) and/or chromosomal abnormalities found in fetuses or infants less than one year of age be reported to the California Genetic Disease Screening Program (GDSP). HIPAA does not affect this reporting requirement. While California law mandates that these data be submitted within 30 days of diagnosis, many facilities find it more practical to submit reports on a quarterly basis. Accordingly, the Quarterly Tracking of Birth Defects Form is provided to facilitate quarterly reporting.

The Quarterly Tracking of Birth Defects Form should serve as a cover page for the quarterly report submission. If there are no birth defect cases to report for the quarter, simply complete the form and return it by itself. If there are birth defect cases to report on behalf of your hospital or clinic, please be sure to indicate the quantities of reportable cases and include all companion forms and any available cytogenetic laboratory reports. All forms relevant to quarterly reporting are available by clicking on the various links on this page.

The Confidential Case Report (CCR) of a Birth Defect Form is designed for reporting neural tube defects and chromosomal abnormalities. To report neural tube defects (ICD-10-CM Codes Q00.0-Q01.9, Q05.0-Q05.9, Q07.0-Q07.03), please complete and submit a CCR Form for each case. To make reporting less labor intensive for hospitals, the Chromosomal Abnormalities Worksheet is designed to collect essential data about more than one case on a single page. To report chromosomal abnormalities (ICD-10-CM Codes Q90.0-Q99.9, excluding Q97.3, Q98.3, Q99.1, and Q99.2), hospitals may complete and submit a Chromosomal Abnormalities Worksheet for the quarter. To report chromosomal abnormalities, cytogenetic laboratories should complete and submit individual CCR Forms for each case. Should the occurrence of both a neural tube defect and a chromosomal abnormality need to be reported for the same patient, please submit only one CCR Form with information pertaining to both sets of conditions. If any information requested on a form is unavailable, please be sure to indicate any other possible source where such information might be obtained.

The cooperation and assistance of the many reporting sources across the state is greatly appreciated. These birth defects data are vital for evaluating the effectiveness of the California Prenatal Screening Program and for monitoring the geographical and ethnic distribution of birth defects (neural tube defects and chromosomal abnormalities) throughout California.

Forms may either be faxed or mailed.

Questions? Contact Jasmine Stewart-Oliver at (510) 412-1524 or CDPH_PNSRegistry@cdph.ca.gov.