Michigan Birth Defects Registry

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Michigan Birth Defects Registry

• Overview
• and
• Status

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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

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Statement of Purpose

• Source of Statistical Data
• Surveillance of Birth Defects Trends
• Permit Research into Etiology
• Enable Referral to Needed Services

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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

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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

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Information Collected

• Case Specifics
• Name and address
• SSN, Medical Record Number
• Mothers Information
• Reportable Diagnostics
• Procedures Provided
• Live Birth Data
• Mortality Data

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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

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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

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Field Quality Assurance Activities in Michigan

• Monitoring Reporting Quality of the Birth Defects
  Registry

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Data Quality Goals

• Completeness
• 95 or Greater
• Accuracy
• 98 or Greater
• Timeliness
• data available within 24 months

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Significant Issues

• Hospital and Lab Based
• Limited to under 2 Years
• No Interstate Exchange
• Live Births only until 2004
• Passive Reporting

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Findings of 2003 Data Quality Audit

• Completeness of 92
• Diagnostic Reporting Accuracy of 97.8
• False Positive Rate of 1.2

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Quality Improvement Activities

• Facility Monitoring
• Reports Received/Expected
• Target Suspect Facilities
• Conduct Facility Audits
• Case-finding
• Re-abstracting
• Repeat Statewide Assessment
• Evaluate 2005 reporting

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Statistical Data Now Available www.michigan.gov/m
dch

• 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

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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

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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

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Cross Reference of Confirmed EDHI to MBDR Reports
Live Births from 1997 - 2000
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Folic Acid Education Program

• Basic Data on Neural Tube Defects
• Rapid Case Reporting -CDC
• Use of Case Reports for Family Contact Approved

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Additional Collaborations Early ON, CSHCS,
Medicaid

• Basic Statistical Data
• Program Specific
• Comparison Data
• Program Evaluation
• Coverage/Penetration
• Trends/Outcomes
• Outreach
• Registry Improvement

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Early On Clients and Michigan Births by Mothers
Age
Births during 1995 - 1997
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Early On Clients and Michigan Births by Prenatal
Care Trimester
Births during 1995 - 1997
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Early On Clients and Michigan Births by Birth
Weight
Births during 1995 - 1997
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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

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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

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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

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Considerations

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