Michigan Birth Defects Registry Overview and Status

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

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

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

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

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

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

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

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

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

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

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

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

Statistical Data Now Available  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

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

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

Cross Reference of Confirmed EDHI to MBDR Reports Live Births from

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

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

Early On Clients and Michigan Births by Mother’s Age Births during

Early On Clients and Michigan Births by Prenatal Care Trimester Births during

Early On Clients and Michigan Births by Birth Weight Births during

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

Developed CSHCS Linked Study File  Determined MBDR/CSHCS Status  Merged Birth/Death/MBDR Data  Identified MBDR Cases – CSHCS Eligible  Identified CSHCS Cases – MBDR Eligible

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

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