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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 reportsRegistry Contains 199,516 CasesLinked to Live Birth RegistryLinked to Mortality FilesLinked to Program Data
– EHDI, CSHCS, Newborn Screening, Medicaid
Information CollectedCase Specifics
– Name and address– SSN, Medical Record Number– Mother’s Information
Reportable DiagnosticsProcedures ProvidedLive Birth DataMortality Data
Data Collection Activities
Process 32,000 reports annually12,000 New Cases AnnuallyAugment 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 ProhibitedChange in Law effective June 2003
– Act 562 of 2002Implemented Certificate of Stillbirth
– June 1, 2003Stillbirth 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 BasedLimited to under 2 Years No Interstate ExchangeLive Births only until 2004Passive 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 FacilitiesConduct Facility Audits
– Case-finding– Re-abstracting
Repeat Statewide Assessment– Evaluate 2005 reporting
Statistical Data Now Available www.michigan.gov/mdch
1992 through 2005 Birth Cohorts Numbers of Cases and DeathsIncidence and Mortality RatesComparative Data on Live BirthsInformation by Type of ConditionCounty Level Data
Central Nervous System Case RatesMichigan Resident/Occurent Births
0204060
Birth Year
Rate
per 1
0,000
Differential Mortality Rates
0
10
20
30
40
50
60
1 2 3 4 5 6 7 8 9 10 11 12 13 14
Age at Death
Rat
e p
er 1
,000
Cases
Michigan
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 ScreensRefer Cases of Hearing Loss Provide Statistical AssistanceEHDI Confirmed Diagnosis Data to
Improve Completeness and Accuracy
Cross Reference of Confirmed EDHI to MBDR Reports
Live Births from 1997 - 2000
All Years 1997 1998 1999 2000All Cases 922 196 266 279 181In MBDR Only 596 141 148 181 126In Hearing Screen Only 231 51 85 59 36In Both, MBDR Hearing Code 75 3 26 30 16In Both, No MBDR Hearing Code 20 1 7 9 3
Folic Acid Education Program
Basic Data on Neural Tube Defects
Rapid Case Reporting -CDCUse 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
OutreachRegistry Improvement
Early On Clients and Michigan Births by Mother’s Age
12.1 13.8
52.9 52.8
33.3 30.6
1.0 1.8
0
10
20
30
40
50
60
Under 20 20 - 29 30 - 39 40 and over
Michigan Births Early n Clients
Births during 1995 - 1997
Early On Clients and Michigan Births by Prenatal Care Trimester
82.2
2.0 3.4
14.9
2.2 4.6
12.4
78.2
0
10
20
30
40
50
60
70
80
90
1st Trimester 2nd Trimester 3rd Trimester Unknown
Michigan Births Early On Clients
Births during 1995 - 1997
Early On Clients and Michigan Births by Birth Weight
0.9 1.36.2
15.7
91.8
68.3
0.2 0.30
102030405060708090
100
<1500 1500-2499 2500-4999 5000 and p
Michigan Births Early On Clients
Births during 1995 - 1997
Registry Research CollaborationsBirth 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 File1998-2003
Determined MBDR/CSHCS Status Merged Birth/Death/MBDR DataIdentified MBDR Cases – CSHCS EligibleIdentified CSHCS Cases – MBDR Eligible
Percent of CSHCS Cases MBDR Reportable
0.0
5.0
10.0
15.0
20.0
25.0
30.0
35.0
40.0
1998 1999 2000 2001 2002 2003
Birth Year
Pe
rce
nt
Proportion Linked to MBDR by Age at CSHCS Approval
0.0
10.0
20.0
30.0
40.0
50.0
60.0
70.0
80.0
90.0
100.0
1st year 2nd Year 3rd Year 4th Year
Age
Perc
ent
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
Age Distribution
28.5
24.4
13.1
27.926.5
20.1
9.9
2.52.1
10.5
24.1
10.5
2.9
10.6
20.6
26.327.0
12.5
0.0
5.0
10.0
15.0
20.0
25.0
30.0
Under 20 20-24 25-29 30-34 35-39 40 and overMother's Age
Per
cent
All Births
CSHCS
MBDR
Birth Weight Distibution
1.96.3
91.8
21.516.7
61.8
25.1
16.4
58.4
0.0
10.0
20.0
30.0
40.0
50.0
60.0
70.0
80.0
90.0
100.0
Under 1500 1500-2499 2500 or more
Birth Weight
Per
cent
All Births
CSHCS
MBDR
Gestational Age Distribution
0.7 1.2
9.1
82.2
0.9
6.5
12.316.3
55.3
0.7
8.2
0.7
16.113.2
52.7
0.0
10.0
20.0
30.0
40.0
50.0
60.0
70.0
80.0
90.0
Under 27Weeks
27- 31 Weeks 32-36 Weeks 37-44 Weeks 45 or MoreWeeks
Calculated Gestation
Perc
ent
All Births
CSHCS
MBDR
Race/Ancestry Distribution
24.8
1.7 0.9
6.42.2
75.9
19.4
3.20.8
6.83.1
72.0 73.3
23.8
1.8 0.5
6.3
2.4
0.0
10.0
20.0
30.0
40.0
50.0
60.0
70.0
80.0
White Black Asian/PI NativeAmerican
Hispanic ArabAmerican
Race/Ancestry
Perc
ent
All Births
CSHCS
MBDR
CSHCS Coverage by Race/Ethnicity
23.724.9
28.8
17.3
24.8
16.9
0.0
5.0
10.0
15.0
20.0
25.0
30.0
35.0
White Black Native American Asian American Hispanic Arab American
Mother's Race/Ethnicity
Perc
ent C
over
ed
CSHCS Coverage by Race/Ethnicity and Pay Source
20.422.4 22.2
25.3
12.213.6
34.3
27.3 26.8
34.0
21.9 22.7
0.0
5.0
10.0
15.0
20.0
25.0
30.0
35.0
40.0
White Black Hispanic Native American Asian/PI Arab American
Mother's Race/Ethnicity
Perc
ent C
over
age
Insured
Medicaid/Self Pay
Coverage by Mother's Age and Race/Ethnicity
32.630.7
22.5
18.720.6
24.126.3
24.923.6
24.5 24.8
30.8
0.0
5.0
10.0
15.0
20.0
25.0
30.0
35.0
under 20 20-24 25-29 30-34 35-39 40+
Mother's Age
Perc
ent C
over
age
White
Black
CSHCS Coverage for Medicaid and Self Pay Births by Mother's Age and Race
0.0
5.0
10.0
15.0
20.0
25.0
30.0
35.0
40.0
45.0
under 20 20-24 25-29 30-34 35-39 40+
Mother's Age
Perc
ent C
over
age
White
Black
CSHCS Coverage by Diagnosis
0.0
10.0
20.0
30.0
40.0
50.0
60.0
70.0
Spina
Bifida
w/o A
nence
phaly
Hydro
cephal
us w/o
Spin
a Bifi
da
Transp
ositio
n of G
reat
Arte
ries
Teral
ogy of F
allo
t
Ventri
cula
r Sep
tal D
efec
t
Atrial
Sep
tal D
efec
t
Endocard
ial C
ushio
n Def
ect
Tricusp
id V
alve
Atre
sia
and S
tenosi
s
Ebstei
n's A
nomal
y
Aortic
Valve
Ste
nosis
Hypopla
stic
Lef
t Hea
rt Syn
drom
e
Cleft
Palat
e an
d Cle
ft Lip
Esophag
eal A
tresi
a/Tra
cheo
esophag
eal F
istu
la
Recta
l and L
arge
Inte
stin
al A
tresi
a/Ste
nosis
Bladder
Exs
trophy
Upper L
imb R
educt
ion D
eform
ities
Lower L
imb R
educt
ion D
eform
ities
Diaphra
gmat
ic H
ernia
Per
cen
t C
ove
rag
e
Considerations
Geographic VariationVariation by Birth FacilityFinancial NeedPay Source from Birth FileDiagnosticsSeverity
