Michigan Birth Defects Registry

1. Michigan Birth Defects Registry Presented by: Mary Kleyn, MS October 23, 2008

2. 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

3. 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

4. MBDR • Statewide reporting began in 1992 • Passive reporting • Available data • 1992-2006 birth cohorts • Infant and maternal identifiers • Diagnosis and procedure codes

5. Collection-Reporting Sources • Supplemental • Sources: • NBS • FIMR • EHDI • CSHCS • Pediatric • Genetic • Clinics Birth Defect Case

6. Collection-Submission Types • Paper abstract • Electronic • Electronic Birth Certificate (EBC) • Birth/Death records

7. Current Status • Almost 400,000 reports have been processed • 32,000 reports processed annually • 12,000 new cases annually

8. MBDR Data (2003) • Overall prevalence of birth defects: 768.6/10,000

9. Current Use • 2006 Annual Report5 • The Michigan Monitor6 • NTD Follow-up Program • Articles7,3 • Presentations/Posters5

10. 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

11. 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

12. Strengths • Centralized reporting to MDCH • Facilities have several reporting methods • Population-based • Externally funded

13. 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

14. 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

15. 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

16. 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.

17. 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.

18. 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

19. MDCH Birth Defects Team Michigan Birth Defects Registry (MBDR) - Vital Records and Health Data Development Section Glenn Copeland, Director Won Silva, Manager Lorrie Simmons, Quality Improvement Coordinator Genomics & Birth Defects Program - Division of Genomics, Perinatal Health and Chronic Disease Epidemiology Violanda Grigorescu Janice Bach Joan Ehrhardt, Program Coordinator Nancy Deising, Care Coordination Specialist Maternal & Child Health Epidemiology Section- Steve Korzeniewski Mary Kleyn, Epidemiologist

20. Thank You • Any questions?

21. References • Centers for Disease Control and Prevention. Birth Defects: Frequently Asked Questions. http://www.cdc.gov/ncbddd/bd/faq1.htm. • 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). • 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). • Centers for Disease Control and Prevention. Birth Defects. http://www.cdc.gov/ncbddd/bd/default.htm. • http://www.mdch.state.mi.us/pha/osr/BirthDefects/Birth%20Defects%20Annual%20Report%2005.pdf • http://www.michigan.gov/documents/mdch/Mi_Monitor_Summer_2007_206358_7.pdf • 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).