- metadata:
- idinfo:
- citation:
- citeinfo:
- title: Secure IBIS-PH Injury Birth Defect Query Module
- type: Health outcome
- descript:
- abstract:
This query contains the following measures: count of birth defects by county and count of birth defects by small areas.
- Important: This data provides public health researchers and professionals with summary information about the rates and patterns of various birth defects in the state of Utah from the Utah Birth Defects Network. This data is not available for public use.
- Measures: 1. Count of birth defects by county 2. Count of birth defects by small areas
- Derivation:
- Numerator: The numerator used for rates and counts is the number of birth defects occurring Utah resident births.
- Denominator: NA
- Rates: NA
- MeasureUse: These data can be used to understand the distribution of the incidence of various birth defects. Birth defects data can be used to link potential exposures to various birth defects. Birth defect case data provides a means to identify unusual changes and differences in the patterns of occurrence of specific birth defects in and within various populations.
- Unit: Birth defect means a congenital anomaly listed in the ICD-9-CM (International Classification of Diseases, 9th Revision, Clinical Modification, established by the United States Center for Health Statistics) with a diagnostic code from 740.0 to 759.9 (prior to October 2015) or in the ICD-10 (International Classification of Diseases, 10th Revision, established by the World Health Organization) with a diagnostic code from Q00-Q99 (starting October 1, 2015).
- Display:
- Variables:
- A: Year
- B: Infant sex
- C: Mother's age group
- D: Birth defect category
- E: Outcome type
- F: County
- G: Small area
- VariableDef:
- Year: Year of infant birth
- InfantSex: All, male, female, indeterminable, ambiguous, unassigned
- MotherAgeGroup: Mother's age can be queried by predefined age groups or by custom age groups.
- BirthDefectCategory: Anencephaly, Spina Bifida, Hipoplastic left heart syndrome, Tetralogy of Fallot, Transposition of great arteries, cleft lip with or without cleft palate, cleft palate, hpospadias, gastroschisis, limb deficiencies, trisomy 21.
- OutcomeType: all types, live births
- Counties
- SmallAreas
- VariableGroups:
- A: Year
- B: Mother's age group
- C: Birth defect category
- D: Outcome type
- E: Small area
- F: County
- Charttypes:
- A: Vertical bar
- B: Horizontal bar
- C: Stacked vertical bar
- D: Area
- E: Stacked area
- F: Pie
- G: Line
- Geography:
- Scope:
Utah
- Boundary:
- West: -114.042925
- East: -109.041501
- North: 42.001718
- South: 36.997693
- GeogScale: Small area
- Time:
- Period: 1992-2014
- Scale: Year
- Updated: Annually
- Purpose: Tracking and studying birth defects in Utah provides the information needed to monitor the burden of disease locally and statewide, to assess services, to allocate resources for optimal care, and to evaluate prevention efforts.
- Use
- DataSources: Birth defects are reported to the Utah Birth Defect Network (UBDN) by hospitals and birthing centers. Once the UBDN receives a report of a birth defect, a UBDN staff member goes to the reporting facility and collects information from the medical records of the infant and the mother.
- DataLimitations: Data for age, sex and diagnostic code were complete. Most of the records were geo-coded and geo-referenced. Those that were not geo-coded or geo-referenced were included with a null geographic location code.
- Standards: Once data is collected, it is entered into a secure database. The Utah Birth Defects Network (UBDN) staff enter data into a secure database. There, an epidemiologist analyzes the data to identify rates, trends, risk factors, and causes. The UBDN takes great care to insure the confidentiality and security of all information that is collected. All identifying information is removed from the data before analysis.
- ReportingProtocols:
- supplinf:
The Utah Birth Defect Network (UBDN) is a state wide public health surveillance system that monitors the occurrence of all major structural malformations in all pregnancy outcomes of Utah resident women. The UBDN collects birth defect data under the Birth Defect Reporting Rule R398-5. The UBDN receives reports of birth defect cases from all hospitals providing birthing services as well as multiple specialty clinics, community health care providers, and the Office of Vital Records and Statistics. The UBDN actively verifies each case reported by the passive reporting sources through medical records abstraction. UBDN abstractors also actively search for additional cases by obtaining information for various log books in each hospital and multiple diagnostic clinics. The UBDN would be considered an “active” birth defect surveillance system with reference to the Surveillance Guidelines and Standards published by the National Birth Defect Prevention Network. Each case is reviewed by a medical geneticist who uses the ICD-9-BPA modified coding schema to code each case. Each case is also classified as isolated, multiple, or genetic.
- Additional: Several factors, such as case-mix and severity complexity, payer-mix, market areas and hospital ownership, affiliation, or teaching status affect the comparability of charge and length of stay across hospitals. Any analysis of charge or length of stay at the hospital level should consider the above factors.
- Citation: Birth Defect data provided by the Utah Birth Defect Network. IBIS-PH population estimates were provided by the Utah Governor's Office of Planning and Budget.
- EEPContact:
- Intro: Metadata created by:
- Name: Health Program Specialist
- Program: Environmental Epidemiology Program
- Department: Utah Department of Health
- Address: 288 North 1460 West
- POBox: P.O. Box 142104
- City: Salt Lake City, UT 84114-2104
- Phone: 801-538-6191
- Email: eep@utah.gov
- Website: http://health.utah.gov/epi/enviroepi/
- DataPartnerContact:
- Program: Utah Birth Defects Network
- Address: PO Box 144697-4697
- City: Salt Lake City, UT 84114-4697
- Phone: 801-883-4661
- Email: eep@utah.gov
- Website: http://health.utah.gov/cshcn/programs/ubdn.html
- Constraints:
- Access: Public Health Professionals may only access Utah Tracking Network data through Secure IBIS-PH or in any other way after submitting a complete application as contained in the document Third Party Application for Access to Secure IBIS-PH for Public Health Professionals. Similarly, researchers must submit a complete application as contained in the document Third Party Application for Access to Secure IBIS-PH for Research Projects. The Scientific Review Board (SRB) does not serve as an Institutional Review Board (IRB). Applications requiring an IRB must submit for IRB approval separately. The applications can be submitted concurrently, but the SRB will not grant data access until they have received proof that the IRB has approved the research project. The SRB may conditionally approve access to Secure IBIS-PH pending IRB approval. The SRB ensures that the research proposal meets all of the data owner(s)’s requirements. More information can found at: http://epht.health.utah.gov/epht-view/dataportal/SecureDatasetIntroduction.html
- Use: NO-USE: This data may not be used in any way to imply Office of Health Care Statistics (OHCS) or Utah Department of Health (UDOH) endorsement of any research objective, commercial or for-profit venture; to advertise or support a commercial product; or to direct or plan targeted advertising. This data may not be used to identify subjects of hospitalization, case information or the individual or organization who reported the case information. PUBLICATION: The data user will comply with OHCS rules for publication or presentation of this data or any results derived from this data. Publication approval of any manuscript or document must be accomplished prior to submission for publication. Data users will provide a copy of any publication draft or public presentation of this data or results derived from this data to the Utah Environmental Public Health Tracking Network (UEPHTN) which will coordinate UEPHTN and OHCS approval to publish or present. See contact information in this metadata. The OHCS requires 30 days to approve draft publications. The OHCS will provide a response in writing to the data user. RIGHT TO REFUSAL: The OHCS and/or the UEPHTN retain the right to refuse any publication or public presentation of the data or results derived from the data. ACKNOWLEDGEMENT: Use of this data requires acknowledgement of the OHCS and the UEPHTN in any publications or public presentations of the data or results derived from the data. Acknowledgement must be made that the research was supported by the OHCS with support from the Utah Department of Health. Acknowledgement must be made that the research was supported by the UEPHTN, which is partially funded by the Centers for Disease Control and Prevention. AUTHORSHIP: Authorship is required when the OHCS or the UEPHTN makes substantial contribution to the data. AUDITS: The OHCS and/or the UEPHTN retain the right to conduct on-site audits of the researcher with or without cause. Audits will be conducted after notification and during normal business hours by representatives of the OHCS or UEPHTN. The audit will observe research practices for protecting data. REPORTS: Data users must submit annual and final reports regarding the progress and/or completion of research projects to the OHCS. This will be done through the UEPHTN.
- Liability: DISCLAIMER OF LIABILITY, RELIABILITY, DAMAGES AND ENDORSEMENT. The Utah Public Health Tracking Network (UEPHTN) is maintained, managed and operated by the Environmental Epidemiology Program (EEP) within the Utah Department of Health (UDOH). In preparing this data, every effort has been made to offer the most current, correct, complete and clearly expressed information possible. Nevertheless, some errors in the data may exist. In particular, but without limiting anything here, the Utah Department of Health disclaims any responsibility for source data, compilation and typographical errors and accuracy of the information that may be contained in this data. These data does not represent the official legal version of source documents or data used to compile this data. The UDOH further reserves the right to make changes to this data at any time without notice. These data have been compiled by the staff of the EEP from a variety of source data, and are subject to change without notice. The UDOH makes no guarantees or representations whatsoever regarding the quality, content, condition, functionality, performance, completeness, accuracy, compilation, fitness or adequacy of the data. By using this data, you assume all risk associated with the acquisition, use, management, and disposition of this data in your information system, including any risks to your computers, software or data being damaged by any virus, software, or any other file which might be transmitted or activated during the data exchange of this data. The UDOH shall not be liable, without limitation, for any direct, indirect, special, incidental, compensatory, or consequential damages, or third-party claims, resulting from the use or misuse of the acquired data, even if the UDOH or its agency has been advised of the possibility of such potential damages or loss. Format compatibility is the user’s responsibility. Reference herein to any specific commercial products, processes, services, or standards by trade name, trademark, manufacture, URL, or otherwise, does not necessarily constitute or imply its endorsement, recommendation or favoring by the UDOH. The view and opinions of the metadata compiler expressed herein do not necessarily state or reflect those of the UDOH, or the data owners and shall not be used for advertising or product endorsement purposes. Use of this data with other data shall not terminate, void or otherwise contradict this statement of liability. The sale or resale of these data, or any portions thereof, is prohibited unless with the express written permission of the UDOH. If errors and/or otherwise inappropriate information are brought to our attention, a reasonable effort will be made to fix or remove them. Such concerns should be addressed to the EEP program manager (See Point of Contact contained in this metadata file).
- Publication:
