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Michigan Birth Defects Registry

The Michigan Birth Defects Registry collects data on reportable birth defects to monitor trends, facilitate research, and provide referrals to needed services. This overview highlights key facts, data collection activities, field quality assurance, and collaborations with other programs.

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Michigan Birth Defects Registry

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  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

  15. 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

  16. 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

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

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

  19. Additional CollaborationsEarly ON, CSHCS, Medicaid • Basic Statistical Data • Program Specific • Comparison Data • Program Evaluation • Coverage/Penetration • Trends/Outcomes • Outreach • Registry Improvement

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

  21. Early On Clients and Michigan Birthsby Prenatal Care Trimester Births during 1995 - 1997

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

  23. 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

  24. Developed CSHCS Linked Study File1998-2003 • Determined MBDR/CSHCS Status • Merged Birth/Death/MBDR Data • Identified MBDR Cases – CSHCS Eligible • Identified CSHCS Cases – MBDR Eligible

  25. 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

  26. Considerations • Geographic Variation • Variation by Birth Facility • Financial Need • Pay Source from Birth File • Diagnostics • Severity

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