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origin_of_data:
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FHS Early ID and Monitoring |
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publication_date:
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20100514 |
New Jersey Birth Defects Maternal Age Maternal Race Ethnicity Infant Sex 2001
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indicator_title:
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New Jersey Birth Defects Maternal Age Maternal Race Ethnicity Infant Sex 2001 |
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abstract:
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The data covers children born in the year 2001 who have been registered by the date the extract was created. NJ law requires that a child must be registered between birth and through five years of age, but does specify a time period following diagnosis within which the child must be registered. Therefore, though a birth defect may be present at birth, a child may not be registered until several years later. This creates a dynamic data base where records maybe updated or added, thereby creating small variations in reported counts for a given year over time.
All registrations are for live births and the child must be a resident of NJ at the time of registration. Out-of-state births are included when a child was a resident of NJ at the time of birth but may have been born in a neighboring hospital, e.g., Children’s Hospital of Philadelphia, or the child was a resident of another state at the time of birth and subsequently moved to NJ.
The parent data base covers the entire state of NJ. The data in this extract is reported at the state level.
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purpose:
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This dataset was compiled for the EPHT Project to show the prevalence of specific birth defects in NJ. |
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supplemental_data_info:
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The parent data base represents the final version of the SAS-based Registry system prior to the implementation of the web-based Birth Defects and Autism Reporting System (BDARS). The parent data base was used to populate the BDARS with legacy data.
The parent data base was updated on a daily basis. This included new registrations and updates, e.g., new diagnosis, change in address, etc., to existing records. Therefore, any data requests for new data should include data from previous years.
In July 2009, the parent data base was moved from a stand alone computer, where a limited amount of information from a registration was stored in a SAS data set, to the web-based BDARS, which stores all information from a registration in SQL Server. Therefore, limited data may be available for children registered prior to July 1, 2009.
Any individual cell where the value is less than five will not be reported. This is done to preserve the privacy of the individual, as some birth defects are so rare that a child may be identified by simply identifying the birth defect and the county of residence.
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time_period:
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date_range_of_dataset:
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beginning_date_in_dataset:
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20010101 |
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beginning_time_in_dataset:
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|
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end_date_of_dataset:
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20011231 |
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end_time_of_dataset:
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publication_date_of_dataset:
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Publication Date |
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dataset_status:
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Complete |
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update_frequency:
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Annually |
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westbound_coordinate:
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-75.559791000000004 |
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eastbound_coordinate:
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-73.893980999999997 |
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northbound_coordinate:
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41.357427000000001 |
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southbound_coordinate:
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38.928767999999998 |
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themekey_type:
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NONE |
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theme_keyword:
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Special Child Health Registry, Special Child Health Services Registry, Birth Defects Registry, Birth Defects, |
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theme_keyword:
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Anencephaly, Spina bifida, hypoplastic left heart syndrome, tetralogy of Fallot, transposition of the great arteries, cleft lip with or without cleft palate, cleft palate without cleft lip, hypospadias, gastroschisis, upper limb deficiencies, lower limb deficiencies, trisomy 21, Down Syndrome, |
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theme_keyword:
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Maternal age group, maternal race group, maternal ethnicity, infant sex |
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placekey_type:
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FIPS 5-2 (State) |
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place_keyword:
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New Jersey, NJ, 34 |
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access_constraints_to_data:
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NONE |
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use_constraints_of_data:
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These are aggregate summary measures of select birth defects in children. Data should not be used in epidemiologic investigations of health outcome and environmental linkages. Data cannot be used for commercial purposes but can be used to form a basis for additional health studies or specific remediation actions. |
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point_of_contact:
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contact_information:
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contact_person:
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FHS Early ID and Monitoring |
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contact_organization:
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NJDOH
Division of Family HEalth Services
Early Identification and Monitoring Program |
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address_type:
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Mailing and Physical |
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address:
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NJDOH
Division of Family Health Services
Early Identification and Monitoring Program
PO Box 364 |
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city:
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Trenton |
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state:
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NJ |
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ZIP_code:
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08625-0364 |
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country:
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United States Of America |
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telephone_number:
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609-292-5676 |
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e-mail:
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hours_of_operation:
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security_system:
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NONE |
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security_classification:
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Unclassified |
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security_handling_procedure:
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NONE |
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native_dataset_environment:
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Data stored and manipulated in SAS. Original data set contained 211,631 records in 130 Mb. |
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data_quality:
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GIS_notes:
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NONE |
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data_completeness:
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The data extract is based upon children who were registered through mid-June 2009. At that time, entry of registrations was suspended as we prepared to move from the SAS-based Registry to the new Web-based Birth Defects and Autism Reporting System (BDARS), which was implemented on July 1, 2009 – all records from the SAS-based Registry were added to the BDARS. All diagnosis descriptions from the hard copy registration forms were converted to ICD9-CM codes by staff nurses, which were stored in the Registry data. Only 99 duplicate records were found in the 45,757 records checked for duplicates, which included all registered children regardless of diagnosis. The final analytical data set for the 12 selected birth defects contained records for 5423 children, which corresponded to 5582 birth defects due to multiple birth defects in some children.
A SAS program was used to check the accuracy and validity of the data. Inconsistencies were found by checking each value in a field with acceptable values, e.g., acceptable values for sex are 1, 2, or 9, and comparing related fields, e.g., data of birth of child with date of birth of mother. The four digit code used by NJ to identify county and municipality were checked for valid values and consistency between county value and zip code. Possible duplicate records were identified by comparing each extracted record with every other extracted record. A name, both first and last, were considered potential duplicates if they matched on a character-by-character basis, had a similar soundex value, had a spedis (function in SAS that assigns a “cost” to change one spelling to another) value within a certain range, or a five character string of the shorter name was included within the longer name (Jones within Smith-Jones), or the last and first names had been switched (Scott James vs James Scott). A date of birth was considered similar if it was exactly the same, or the month and day was the same and birth year was +/- 2 years, or the year was the same and the month and day had been switched (1/10/2001 vs 10/1/2001), or miss keying of values due to similarity in appearance (1 vs 7) on the hard copy registration, or proximity on the numeric key pad (6 vs 9). A record was identified as a possible if there were similarities in all three fields, first name, last name, and date of birth.
The denominator dataset for all live births was specific to the birth year specified above.
The completeness of the final summary table was checked by calculating the expected number of rows based upon the total number of variables in each cross classification variable –Defects(12), Counties(22), Maternal Race/Ethnicity Groups(9), and Infant Sex(3). In addition, values from selected cells obtained from a separate cross tabulation were compared to values in the corresponding cells in the final BD1 summary table.
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data_processing_step_description:
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Created an extract of all children registered whose date of birth was within the date range specified above from an archived file that was used to transfer our legacy data from a stand alone system to the web-based Birth Defects and Autism Reporting System (BDARS) that was implemented on July 1, 2010. |
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data_processing_step_date:
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20100324 |
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data_processing_step_description:
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Created summary table files in both CSV and XML file formats using numerator and denominator datasest described above. |
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data_processing_step_date:
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20100429 |
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data_processing_step_description:
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Created analytical numerator and denominator datasets used to produce summary tables.
Numerator Data:
The records in the unique registered children dataset were then merged by unique registration number with a data set containing matched Registry and Birth file records – This matched (deterministic with manual review) dataset is created on a regular basis, however, there is normally a 3 to 4 year delay in matching records because children may be registered up to age 6 years. These merged records contain demographic information, e.g., mother’s race and ethnicity, which were not present in the Registry data. Since these merged record may contain multiple values for a single demographic, when selecting values for the final analytical dataset, the order of preference was birth file first, then initial registration (based upon registration date), and finally duplicate registration. The final analytical dataset was created by selecting those records that contained one or more of the 12 birth defects listed above.
Denominator Data:
A flat file was supplied by the NJ Center for Health Statistics for the specific birth year which had been previously converted to SAS files as part of the regular matching of Registry and birth files described above, were used for the denominator data. An analytical data set was created by selecting only those fields needed for analysis then assigning variable names and values based upon the data dictionary.
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data_processing_step_date:
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20100429 |
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data_processing_step_description:
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Created a dataset of unique registered children from the originally extracted dataset. During this process all invalid/inconsistent data was corrected and duplicate records were merged into a single record. The merged record retained all the information from the separate duplicate records. However, if the merged record contained duplicate diagnoses, e.g., Down Syndrome, icd9-cm of 75800, then a prefix was added to the duplicate diagnosis so the duplicate diagnosis would not be counted. |
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data_processing_step_date:
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20100409 |
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data_processing_step_description:
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Cleaned the above extracted dataset by checking for valid data values and consistency between data fields, see Completeness Report below for specific criteria. Each record identified with invalid/inconsistent data was manually reviewed. |
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data_processing_step_date:
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20100401 |
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data_processing_step_description:
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Cleaned the above extracted dataset by checking for duplicate registrations, i.e., where a child may have been registered by more than one facility. Possible duplicates were identified by comparing each record in the extracted data with every other record in the extracted data using a set of criteria that identified similarities in first name, last name, and date of birth, see Completeness Report below for specific criteria. Each possible duplicate record was manually reviewed. |
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data_processing_step_date:
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20100329 |
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data_processing_step_description:
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Cleaned the above extracted dataset by checking for duplicate registration numbers – each child should have a unique registration number. |
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data_processing_step_date:
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20100324 |
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data_overview:
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data_dictionary:
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Below are listed each variable, its type, and acceptable values.
BIRTHDEFECT: integer 1-12
1 (anencephaly)
2 (spina bifida without anencephaly)
3 (hypoplastic left heart syndrome)
4 (tetralogy of Fallot)
5 (transposition of the great arteries/vessels)
6 (cleft lip with or without cleft palate)
7 (cleft palate without cleft lip)
8 (hypospadias)
9 (gastroschisis)
10 (upper limb deficiencies)
11 (lower limb deficiencies)
12 (trisomy 21)
STATE: string (2) state FIPS code
STARTDATE: date yyyymmdd
ENDDATE: date yyyymmdd
SURVEILLANCE: text (2) A (active) P (passive) PF (passive with follow-up)
ASCERTAINMENT: text (3) L (live births only) LF (live births + fetal deaths) LT (live births + pregnancy terminations) LFT (live births + fetal deaths + pregnancy terminations)
CODESET: integer 1 (icd-9-cm) 2 (icd-9-cm, CDC coding based upon BPA)
MATERNALAGEGROUP: integer 1 (less than 20 years) 2 (20-24 years) 3 (25-29 years) 4 (30-34 years) 5 (35-39 years) 6 (greater than or equal to 40 years) 9 (unknown)
MATERNAL ETHNICITY: text (2) H (hispanic), NH (nonhispanic), U (unknown)
MATERNALRACEGROUP: text (2) W (white), B (black), O (other), NS (not submitted)
INFANTSEX: text(1) M (male) F (female) U (unknown)
TLB: integer (total live births)
TLBWBD: integer (total live births with birth defect)
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contact_information:
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contact_person:
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NJEPHT Metadata Coordinator |
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contact_organization:
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NJ Department of Health |
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address_type:
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Physical |
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address:
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135 East State Street
4th Floor, Rear
Office # 465 |
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city:
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Trenton |
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state:
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NJ |
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ZIP_code:
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08625 |
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country:
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United States Of America |
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telephone_number:
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609-826-4972 |
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e-mail:
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nj.epht@doh.state.nj.us |
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hours_of_operation:
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M-F; 9PM - 5PM EST |
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data_file_spec_info:
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Data available in CSV and XML formats. Files size is less than 2MB.
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data_use_liability:
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In preparation of data, every effort has been made to offer the most current, and correct data possible. Nevertheless, inadvertent errors in data may occur. The NJEPHTN and National EPHTN disclaim any responsibility for data errors and accuracy of the information that may be contained within this database. The state and national EPHTN also reserve the right to make changes at any time without notice. |
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data_request_info:
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All data release requires approval of NJ Department of Health Institutional Review Board (IRB). Please contact the data steward with additional questions.
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contact_information:
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contact_person:
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NJEPHT Metadata Coordinator |
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contact_organization:
|
NJ Department of Health |
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address_type:
|
Physical |
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address:
|
135 East State Street
4th Floor, Rear
Office # 465 |
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city:
|
Trenton |
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state:
|
NJ |
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ZIP_code:
|
08625 |
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country:
|
United States Of America |
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telephone_number:
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609-826-4972 |
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e-mail:
|
nj.epht@doh.state.nj.us |
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hours_of_operation:
|
M-F; 9PM - 5PM EST |
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metadata_standard_name:
|
EPHTN Tracking Network Profile Version 1.2 |
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metadata_access_constraints:
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NONE |
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metadata_use_constraints:
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NONE |
New Jersey Environmental Public Health Tracking Program