1. Michigan Birth Defects Registry Overview and Status

2. Some Key Facts  Established by Act 236 of 1988  Requires Reporting by Hospitals and Cytogenetics Laboratories  Passive Reporting  Defined List of Reportable Conditions  Reporting Began State Wide in 1992

3. Statement of Purpose  Source of Statistical Data  Surveillance of Birth Defects Trends  Permit Research into Etiology  Enable Referral to Needed Services

4. Reportable Conditions  Congenital Anomalies –Excludes only minor conditions  Other Conditions that Associate –Immune/Metabolic Deficiencies –Other Abnormalities  Infectious Disease Exposures –Syphilis/Rubella/CMV/etc  Maternal Exposures –Alcohol/Drugs/Toxic Agents

5. Current Status of the Registry Processed 393,616 reports  Registry Contains 199,516 Cases  Linked to Live Birth Registry  Linked to Mortality Files  Linked to Program Data – EHDI, CSHCS, Newborn Screening, Medicaid

6. Information Collected  Case Specifics –Name and address –SSN, Medical Record Number –Mother’s Information  Reportable Diagnostics  Procedures Provided  Live Birth Data  Mortality Data

7. Data Collection Activities  Process 32,000 reports annually  12,000 New Cases Annually  Augment Case Reports –Pediatric Genetics Clinics –Early Hearing and Detection –Metabolic Screening Cases –Medicaid/Childrens Special Health Care  Hospital Discharge Data

8. Status of Fetal Deaths  Previously Prohibited  Change in Law effective June 2003 –Act 562 of 2002  Implemented Certificate of Stillbirth –June 1, 2003  Stillbirth Birth Defects Reporting –January 1, 2004

9. Field Quality Assurance Activities in Michigan Monitoring Reporting Quality of the Birth Defects Registry

10. Data Quality Goals  Completeness –95% or Greater  Accuracy –98% or Greater  Timeliness –data available within 24 months

11. Significant Issues  Hospital and Lab Based  Limited to under 2 Years  No Interstate Exchange  Live Births only until 2004  Passive Reporting

12. Findings of 2003 Data Quality Audit  Completeness of 92%  Diagnostic Reporting Accuracy of 97.8%  False Positive Rate of 1.2%

13. Quality Improvement Activities  Facility Monitoring –Reports Received/Expected  Target Suspect Facilities  Conduct Facility Audits –Case-finding –Re-abstracting  Repeat Statewide Assessment –Evaluate 2005 reporting

14. Statistical Data Now Available www.michigan.gov/mdch  1992 through 2005 Birth Cohorts  Numbers of Cases and Deaths  Incidence and Mortality Rates  Comparative Data on Live Births  Information by Type of Condition  County Level Data

17. Evaluation of Case Referrals  Regional Review of Cases  Review of Case Management –Medical Records Review  Early On, CHSCH Referrals  Source of Referral/Referral Practices  Survey of Families –Utilization of Services –Perceived Need  Survey of Physicians –Knowledge and Practice

18. Collaboration with EHDI  Assist with Data on Screens  Refer Cases of Hearing Loss  Provide Statistical Assistance  EHDI Confirmed Diagnosis Data to Improve Completeness and Accuracy

19. Cross Reference of Confirmed EDHI to MBDR Reports Live Births from 1997 - 2000

20. Folic Acid Education Program  Basic Data on Neural Tube Defects  Rapid Case Reporting -CDC  Use of Case Reports for Family Contact Approved

21. Additional Collaborations Early ON, CSHCS, Medicaid  Basic Statistical Data –Program Specific –Comparison Data  Program Evaluation –Coverage/Penetration –Trends/Outcomes  Outreach  Registry Improvement

22. Early On Clients and Michigan Births by Mother’s Age Births during 1995 - 1997

23. Early On Clients and Michigan Births by Prenatal Care Trimester Births during 1995 - 1997

24. Early On Clients and Michigan Births by Birth Weight Births during 1995 - 1997

25. Registry Research Collaborations  Birth Defects Among Infants Perinatally Exposed to HIV  Mortality in Children with Birth Defects  Evaluation of Potential Clusters  Rate of Subsequent NTDs to Mothers with an NTD Child  Analysis of Newborn Blood Spots for Selected Children with Birth Defects

26. Developed CSHCS Linked Study File 1998-2003  Determined MBDR/CSHCS Status  Merged Birth/Death/MBDR Data  Identified MBDR Cases – CSHCS Eligible  Identified CSHCS Cases – MBDR Eligible

29. Differences Between CSHCS Eligible Children and MBDR Reportable Conditions Are Expected  Fundamental Differences –Differences in Criteria for CSHCS and MBDR –Children Leaving CSHCS  Data Comparability Issues/Problems –Late Reporting/ Timing Issues –Completeness –MBDR Primarily Hospital Based –MBDR Reportable to 2 Years

39. Considerations  Geographic Variation  Variation by Birth Facility  Financial Need  Pay Source from Birth File  Diagnostics  Severity