overview of michigan birth defects registry
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Michigan Birth Defects Registry
Presented by: Mary Kleyn, MS
October 23, 2008
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Public Health Importance
1 in 33 babies is born with a birth defect1
120,000 babies are born with a birth defect in the United States every year1
Associated with adverse outcomes Infant mortality2
Childhood mortality3
Long-term disability 4
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Michigan Birth Defects Program
Components Michigan Birth Defects Follow-up Program
Genomics Section, Division of Genomics, Perinatal Health and Chronic Disease Epidemiology
Michigan Birth Defects Registry (MBDR) Vital Records and Health Data Development
Section, Division for Vital Records and Health Statistics
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MBDR
Statewide reporting began in 1992 Passive reporting Available data
1992-2006 birth cohorts Infant and maternal identifiers Diagnosis and procedure codes
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Collection-Reporting Sources
Hospital/Lab Report
Death RecordBirth Record
Birth Defect Case
Supplemental Sources:
•NBS
•FIMR
•EHDI
•CSHCS
•Pediatric Genetic Clinics
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Collection-Submission Types
Paper abstract Electronic Electronic Birth
Certificate (EBC) Birth/Death records
0%
20%
40%
60%
80%
100%
2000-2001
2002-2003
2004-2005
2006-2007
Type of MBDR Report Submission by Year of Admission, Michigan 2000-2007
Birth/Death
EBC
Electronic
Paper
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Current Status
Almost 400,000 reports have been processed 32,000 reports processed annually 12,000 new cases annually
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MBDR Data (2003)
Overall prevalence of birth defects: 768.6/10,000
Musculoskeletal System, 21%
Heart and Circulatory
System, 22%
Other, 39%
Genitourinary System, 18%
Diagnostic Group Percentage
Heart and Circulatory System 22%
Musculoskeletal System 21%
Genitourinary System 18%
Respiratory System 7%
Digestive System 6%
Central Nervous System 5%
Eye 4%
Integument 3%
Chromosomal Anomaly 3%
Orofacial Clefts 2%
Ear/Face/Neck 2%
Other/Unspecified 7%
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Current Use
2006 Annual Report5
The Michigan Monitor6
NTD Follow-up Program Articles7,3
Presentations/Posters5
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Future Use
Proposed study Neonatal Intensive Care Unit Length of Stay and
Accuracy of Diagnosis of Birth Defects, Michigan, 1999-2004
Develop and disseminate “profile sheets” on birth defects
Map rates and perform cluster analyses of select birth defects over time
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External Use
Wayne State University Metabolic newborn screening for congenital heart defect Tandem mass spectrometry of newborn birth defects
University of Michigan Spatial analysis of congenital anomalies reported to the
MBDR from 1992-2002 Mortality trends in children with hypoplastic left heart
CDC Leading major birth defects among births to women of Arab
ancestry living in Michigan, 1992-2002
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Strengths
Centralized reporting to MDCH Facilities have several reporting methods Population-based Externally funded
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Limitations
No data exchange between states Implications:
This may cause an undercount of the actual number of cases and may significantly affect the completeness of reporting for counties whose residents commonly travel outside Michigan for health care.
Possible Solutions: Rates are calculated only for resident children
who are also born in Michigan. Establish interstate data exchange
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Limitations
Passive reporting Implications:
Inconsistent or incomplete reporting may lead to a reduced number of cases.
Over-reporting due to suspected diagnoses that are later ruled out may cause on over count of the number of cases.
Both situations make comparing rates of birth defects over time or between regions difficult.
Possible Solutions: Standardization of collection and quality assurance
over time Perform linkages with other databases to check
diagnostic accuracies
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Limitations
Passive reporting Implications:
Case reports may contain missing data, making the data unusable.
Possible Solutions: A web-based training module was
implemented in January 2006 for staff who submit case reports.
Develop a “report” for hospitals on what information is missing and how often it is missing
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Limitations
Timeliness Implications:
Valuable time may be lost by not observing important trends until 2 years after they occur.
Possible Solution: Train facilities to use electronic reporting
instead of paper reporting, because this requires fewer steps for quality assurance, data entry, and formatting.
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Limitations
No data on outcomes of prenatal diagnoses of birth defects
Implications: The outcomes of prenatal diagnoses of birth
defects, particularly spontaneous or elective termination, may affect the rates of birth defects.
Possible Solution: The Prenatal Ascertainment Project collected
data on prenatally diagnosed birth defects from 8 Michigan hospitals.
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Discussion
Purpose of MBDR Collect statistical data on the incidence of birth
defects and monitor trends Facilitate research studies on etiology of
various birth defects Provide data for prevention efforts, program
planning and evaluation
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Michigan Birth Defects Registry (MBDR) - Vital Records and Health Data Development Section
Glenn Copeland, DirectorWon Silva, ManagerLorrie Simmons, Quality
Improvement Coordinator
Genomics & Birth Defects Program - Division of Genomics, Perinatal Health and Chronic Disease Epidemiology
Violanda GrigorescuJanice BachJoan Ehrhardt, Program
CoordinatorNancy Deising, Care
Coordination Specialist
MDCH Birth Defects Team
Maternal & Child Health Epidemiology Section-
Steve Korzeniewski
Mary Kleyn, Epidemiologist
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Thank You
Any questions?
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References
1. Centers for Disease Control and Prevention. Birth Defects: Frequently Asked Questions. http://www.cdc.gov/ncbddd/bd/faq1.htm.
2. Anderson RN, Kochanek KD, Murphy SL. Report of the final mortality statistics, 1995. Hyattsville, Maryland: US Department of Health and Human Services, CDC, National Center for Health Statistics, 1997. (Monthly vital statistics report; vol 45, no. 11, suppl 2).
3. Copeland GE, Kirby RS. Using birth defects registry data to evaluate infant and childhood mortality associated with birth defects: An alternative to traditional mortality assessment using underlying cause of death statistics. Birth Defects Research Part A: Clinical and Molecular Teratology 79:792-797 (2007).
4. Centers for Disease Control and Prevention. Birth Defects. http://www.cdc.gov/ncbddd/bd/default.htm.
5. http://www.mdch.state.mi.us/pha/osr/BirthDefects/Birth%20Defects%20Annual%20Report%2005.pdf
6. http://www.michigan.gov/documents/mdch/Mi_Monitor_Summer_2007_206358_7.pdf
7. Berger KH, Zhu B, Copeland G. Mortality throughout early childhood for Michigan Children Born with Congenital Anomalies, 1992-1998. Birth Defects Research Part A: Clinical and Molecular Teratology 67:656-661 (2003).