Birth Defects Surveillance Report:
Cumulative Data, 2006-2009
Birth Defects Monitoring and Analysis Unit
Children & Youth with Special Health Needs Section
Community and Family Health Division
August 2012
Introduction
The Minnesota Department of Health (MDH) Birth Defects Program gathers data about babies
born each year with certain health conditions diagnosed within the first year of life. State of
Minnesota statutory language (MS144.2215-2219) authorizes the MDH to collect information on
birth defects in Minnesota. The primary goals of the Birth Defects Program as defined in statute
are to:
• Monitor incidence trends of birth defects to detect emerging health concerns and identify
affected populations,
• Ensure appropriate services are provided to affected families,
• Prevent birth defects through targeted education,
• Educate health care providers and the public regarding birth defects, and
• Stimulate research on risk factors, treatment, prevention, and the cure of birth defects.
The Birth Defects program performs active surveillance, which means trained abstractors review
medical records to make sure all reported potential cases meet rigorous case definitions
established by both Minnesota and national experts. After the birth defects information is
reviewed and validated, parents of children in the database are notified by mail of their right to
have identifying information removed from the database if they choose (“opt-out”). For families
that choose to opt-out, birth defect information is retained in the database, but is not connected to
any of the child’s or parents’ identifying information. For families that do not choose to opt-out,
notices are sent to participating local public health agencies to help ensure families are connected
to available resources. Until 2010, the Birth Defects Program focused on surveillance in
Hennepin and Ramsey counties. Funding received from the 2010 state legislative session has
allowed the Birth Defects Program to expand population-based data collection, services, and
prevention efforts statewide. For more information about the way birth defects surveillance is
conducted in Minnesota, please see the companion Operations Report.
This data report includes the case counts for 45 categories of birth defects for children born in
2006 through 2009. The data include infants born in Minnesota facilities to mothers residing in
Minnesota at the time of birth. Minnesota’s surveillance efforts have focused on Hennepin and
Ramsey counties and we are confident that essentially all births to residents of these two counties
are covered. Therefore estimated prevalence rates will be reported only for these two counties.
However, case counts and LPH notification/referral data will be reported for statewide cases.
Because individual birth defects are rare, the counts of many defects are very small and could
lead to a loss of privacy for families of children with these conditions. For that reason, the data
are reported in total for the entire period of 2006-2009 and actual numbers of cases will be
suppressed when less than five. When necessary to prevent calculation of suppressed numbers,
other numbers must also be suppressed. Time trend analysis is not included in this report because
very few years of data are available, and population-based data are available from only two
counties. This leads to very small numbers of cases for some defects, leading to unstable
prevalence rates. Trend analysis may be performed in the future when multiple years of
statewide data are available.
Birth Defects Surveillance Report: Cumulative Data, 2006-2009
Published 08/2012
2
Surveillance Methods
The Minnesota Birth Defects Program uses a multi-source active surveillance methodology with
program review of all cases and clinical review of selected cases. The program uses National
Birth Defects Prevention Network (NBDPN) guidelines for birth defects surveillance
(http://www.nbdpn.org/birth_defects_surveillance_gui.php). Forty-five birth conditions are
tracked in Minnesota, including 44 of the birth defects recommended by NBDPN as well as the
single ventricle defect. The program uses CDC/BPA codes to categorize these conditions (please
see the Appendix for the list of included codes). Confirmed cases are linked with the Minnesota
birth certificate file to verify Minnesota residence and mother’s age, gather race/ethnicity data,
and find the birth weight and estimated gestational age when not available in the medical record.
The use of multiple data sources is important to help ensure that all cases are identified. In
addition to the primary case finding source of hospital medical records, the Birth Defects
Program uses birth certificates, Medicaid claims data, and newborn screening data for case
finding. Please see the companion Operations Report for more details about Minnesota’s
surveillance methods.
Minnesota began active birth defects surveillance on June 1, 2005. Therefore the first calendar
year of birth data available is 2006. As mentioned above, prevalence rates are currently available
for only Hennepin and Ramsey counties. Quality control and data evaluation efforts (see
Operations Report) are performed annually, including an assessment of completeness, accuracy
and timeliness. Because cases may be abstracted through one year of age and then subsequent
quality control analysis must be performed, the latest full birth year of data available for this
report is 2009.
Statewide Data
For birth years of 2006-2009, 4,110 children were included in the Birth Defects Information
System with at least one of the 45 monitored birth defects. This figure displays the children that
have one or more of these 45 conditions. It is possible that these children have other co-occurring
conditions which are not included in BDIS. Approximately 34% of children in the system had
more than one defect (Figure 1).
Birth Defects Surveillance Report: Cumulative Data, 2006-2009
Published 08/2012
3
Figure 1. Count per Child of the 45 Birth Defects in BDIS*, 2006-2009 Birth Years.
Number of Defects per Child
1 defect
2 defects
10%
3 defects
4 defects
5+ defects
3% 2%
18%
67%
*Please note that in this time period, Minnesota had a regional surveillance system; some of the
cases included in the above chart occurred outside the 2006-2009 catchment areas of Hennepin
and Ramsey Counties.
Population-Based Hennepin and Ramsey County Data
Counts and prevalence rates for all 45 categories of coded birth defects in children born to
residents of Hennepin and Ramsey Counties are presented in Table 1. Table 2 contains data
broken down by Race/Ethnicity. Table 3 contains data broken down by child’s gender. For many
defects the actual counts are not displayed for individual Race/Ethnicity or gender groups in
order to protect data privacy. Data for the three chromosomal anomalies are presented by
maternal age in Table 4.
Table 1: Birth Defects counts, prevalence rates, and frequency rank for Hennepin and Ramsey
counties, (2006 – 2009 data, total live births = 96,859). Rates are per 10,000 live births.
Defect
Central Nervous System
Anencephalus
Encephalocele
Hydrocephalus without spina bifida
Microcephalus
Spina bifida without anencephalus
N
Rate
Rank
8
3
24
44
29
0.8
0.3
2.5
4.5
3.0
34
41
23
13
20
Birth Defects Surveillance Report: Cumulative Data, 2006-2009
Published 08/2012
4
Defect
Eye
Aniridia
Anophthalmia/microphthalmia
Congenital cataract
Ear
Anotia/microtia
Cardiovascular
Aortic valve stenosis
Atrial septal defect
Coarctation of aorta
Common truncus
Ebstein's anomaly
Endocardial cushion defect
Hypoplastic left heart syndrome
Patent ductus arteriosus
Pulmonary valve atresia and stenosis
Single Ventricle
Tetralogy of Fallot
Transposition of great arteries
Tricuspid valve atresia and stenosis
Ventricular septal defect
Orofacial
Choanal atresia
Cleft lip with and without cleft palate
Cleft palate without cleft lip
Gastrointestinal
Biliary atresia
Esophageal atresia/tracheoesophageal fistula
Hirshsprung's disease (congenital megacolon)
Pyloric stenosis
Rectal and large intestinal atresia/stenosis
Genitourinary
Bladder exstrophy
Hypospadias and Epispadias
Obstructive genitourinary defect
Renal agenesis/hypoplasia
N
Rate
Rank
1
8
11
0.1
0.8
1.1
44
35
30
11
1.1
31
6
444
49
5
2
42
23
171
56
15
47
44
7
324
0.6
45.8
5.1
0.5
0.2
4.3
2.4
17.7
5.8
1.5
4.9
4.5
0.7
33.5
38
1
11
40
43
15
24
5
9
27
12
14
37
2
11
97
55
1.1
10.0
5.7
32
8
10
6
29
16
170
33
0.6
3.0
1.7
17.6
3.4
39
21
26
6
19
3
248
196
34
0.3
25.6
20.2
3.5
42
3
4
18
Birth Defects Surveillance Report: Cumulative Data, 2006-2009
Published 08/2012
5
Defect
Musculoskeletal
Congenital hip dislocation
Diaphragmatic hernia
Gastroschisis
Omphalocele
Reduction deformity, lower limbs
Reduction deformity, upper limbs
Chromosomal
Trisomy 13
Trisomy 18
Trisomy 21/Down Syndrome
Other
Fetal Alcohol Syndrome
Total Defects
N
Rate
Rank
40
26
41
15
8
15
4.1
2.7
4.2
1.5
0.8
1.5
17
22
16
29
36
28
9
21
143
0.9
2.2
14.8
33
25
7
0
2,590
0.0
267.4
45
**Hypospadias and epispadias: prevalence per 10,000 male births.
Birth Defects Surveillance Report: Cumulative Data, 2006-2009
Published 08/2012
6
Table 2: By Race/Ethnicity: Birth Defects counts* and prevalence rates for Hennepin and Ramsey counties; 2006 – 2009 data. Rates
are per 10,000 live births.
Defect
Hispanic
Asian
Am. Indian
Other /
Unknown
N
Rate
White
Black
N
Rate
N
Rate
N
Rate
N
Rate
N
Rate
Anencephalus
1
2.0
1
0.6
2
1.7
2
1.8
1
8.7
1
2.7
Encephalocele
1
0.2
2
1.1
0
0.0
0
0.0
0
0.0
0
0.0
Hydrocephalus without spina bifida
14
2.7
6
3.4
3
2.6
0
0.0
0
0.0
1
2.7
Microcephalus
10
1.9
16
9.1
8
6.9
6
5.3
0
0.0
4
10.7
Spina bifida without anencephalus
19
3.7
3
1.7
3
2.6
1
0.9
1
8.7
2
5.3
Aniridia
0
0.0
0
0.0
0
0.0
1
0.9
0
0.0
0
0.0
Anophthalmia/microphthalmia
4
0.8
2
1.1
1
0.9
0
0.0
0
0.0
1
2.7
Congenital cataract
6
1.2
1
0.6
1
0.9
1
0.9
0
0.0
2
5.3
3
0.6
1
0.6
1
0.9
1
0.9
0
0.0
0
0.0
Atrial septal defect
194
37.6
99
56.5
69
59.8
38
33.5
3
26.2
41
109.7
Coarctation of aorta
27
5.2
11
6.3
4
3.5
4
3.5
0
0.0
3
8.0
3
0.6
1
0.6
1
0.9
0
0.0
0
0.0
0
0.0
Central Nervous System
Eye
Cardiovascular
Aortic valve stenosis
Common truncus
Ebstein's anomaly
1
0.2
0
0.0
1
0.9
0
0.0
0
0.0
0
0.0
Endocardial cushion defect
23
4.5
6
3.4
3
2.6
5
4.4
0
0.0
5
13.4
Hypoplastic left heart syndrome
15
2.9
3
1.7
3
2.6
0
0.0
0
0.0
2
5.3
Patent ductus arteriosus
77
14.9
43
24.6
22
19.1
13
11.5
1
8.7
15
40.1
Pulmonary valve atresia and stenosis
25
4.8
8
4.6
9
7.8
7
6.2
1
8.7
6
16.0
7
1.4
3
1.7
3
2.6
2
1.8
0
0.0
0
0.0
Tetralogy of Fallot
28
5.4
8
4.6
1
0.9
7
6.2
0
0.0
3
8.0
Transposition of great arteries
22
4.3
8
4.6
5
4.3
8
7.0
0
0.0
1
2.7
Single Ventricle
Tricuspid valve atresia and stenosis
Ventricular septal defect
3
0.6
3
1.7
0
0.0
1
0.9
0
0.0
0
0.0
148
28.7
70
40.0
51
44.2
23
20.3
5
43.6
27
72.2
Birth Defects Surveillance Report: Cumulative Data, 2006-2009
Published 08/2012
7
Defect
Hispanic
Asian
Am. Indian
Other /
Unknown
N
Rate
White
Black
N
Rate
N
Rate
N
Rate
N
Rate
N
Rate
4
0.8
1
0.6
3
2.6
0
0.0
0
0.0
3
8.0
4
0.8
3
1.7
3
2.6
0
0.0
0
0.0
1
2.7
Cleft lip with and without cleft palate
50
9.7
14
8.0
15
13.0
10
8.8
3
26.2
5
13.4
Cleft palate without cleft lip
31
6.0
6
3.4
9
7.8
4
3.5
1
8.7
4
10.7
4
0.8
0
0.0
0
0.0
1
0.9
0
0.0
1
2.7
Esophageal atresia/tracheoesophageal fistula
19
3.7
4
2.3
2
1.7
1
0.9
0
0.0
3
8.0
Hirshsprung's disease (congenital megacolon)
8
1.6
3
1.7
2
1.7
1
0.9
0
0.0
2
5.3
113
21.9
13
7.4
20
17.3
3
2.6
7
61.0
14
37.4
15
2.9
7
4.0
5
4.3
2
1.8
0
0.0
4
10.7
1
0.2
0
0.0
0
0.0
0
0.0
0
0.0
2
5.3
Hypospadias and Epispadias
145
28.1
46
26.3
15
13.0
11
9.7
0
0.0
31
82.9
Obstructive genitourinary defect
101
19.6
35
20.0
28
24.3
16
14.1
0
0.0
16
42.8
15
2.9
4
2.3
7
6.1
3
2.6
0
0.0
5
13.4
Congenital hip dislocation
20
3.9
7
4.0
4
3.5
0
0.0
1
8.7
8
21.4
Diaphragmatic hernia
18
3.5
0
0.0
4
3.5
3
2.6
0
0.0
1
2.7
Gastroschisis
14
2.7
6
3.4
7
6.1
10
8.8
1
8.7
3
8.0
Omphalocele
5
1.0
5
2.9
3
2.6
0
0.0
0
0.0
2
5.3
Reduction deformity, lower limbs
2
0.4
4
2.3
1
0.9
0
0.0
0
0.0
1
2.7
Reduction deformity, upper limbs
5
1.0
4
2.3
2
1.7
3
2.6
0
0.0
1
2.7
Ear
Anotia/microtia
Orofacial
Choanal atresia
Gastrointestinal
Biliary atresia
Pyloric stenosis
Rectal and large intestinal atresia/stenosis
Genitourinary
Bladder exstrophy
Renal agenesis/hypoplasia
Musculoskeletal
Birth Defects Surveillance Report: Cumulative Data, 2006-2009
Published 08/2012
8
Defect
Hispanic
Asian
Am. Indian
Other /
Unknown
N
Rate
White
Black
N
Rate
N
Rate
N
Rate
N
Rate
N
Rate
Trisomy 13
2
0.4
4
2.3
3
2.6
0
0.0
0
0.0
0
0.0
Trisomy 18
11
2.1
5
2.9
1
0.9
2
1.8
0
0.0
2
5.3
Trisomy 21/ Down Syndrome
66
12.8
34
19.4
16
13.9
10
8.8
2
17.4
15
40.1
0
0.0
0
0.0
0
0.0
0
0.0
0
0.0
0
0.0
1,284
249.0
500
285.6
341
295.4
200
176.2
27
235.4
238
636.5
Chromosomal
Other
Fetal Alcohol Syndrome
Total Defects
*Numbers of birth defects are not shown in some cases to preserve data privacy.
**Hypospadias and epispadias: prevalence per 10,000 male births.
Birth Defects Surveillance Report: Cumulative Data, 2006-2009
Published 08/2012
9
Table 3: By Gender: Birth Defects counts* and prevalence rates for Hennepin and Ramsey
counties; 2006 – 2009 births. Rates are per 10,000 live births.
Defect
Central Nervous System
Anencephalus
Encephalocele
Hydrocephalus without spina bifida
Microcephalus
Spina bifida without anencephalus
Eye
Aniridia
Anophthalmia/microphthalmia
Congenital cataract
Ear
Anotia/microtia
Cardiovascular
Aortic valve stenosis
Atrial septal defect
Coarctation of aorta
Common truncus
Ebstein's anomaly
Endocardial cushion defect
Hypoplastic left heart syndrome
Patent ductus arteriosus
Pulmonary valve atresia and stenosis
Single Ventricle
Tetralogy of Fallot
Transposition of great arteries
Tricuspid valve atresia and stenosis
Ventricular septal defect
Orofacial
Choanal atresia
Cleft lip with and without cleft palate
Cleft palate without cleft lip
Female
N
Rate
Male
N
Rate
Unknown
N
Rate
4
3
13
25
12
2.0
0.6
2.7
5.3
2.5
4
0
11
19
17
0.8
0.0
2.2
3.8
3.4
0
0
0
0
0
N/A
N/A
N/A
N/A
N/A
0
4
9
0.0
0.8
1.9
1
4
2
0.2
0.8
0.4
0
0
0
N/A
N/A
N/A
4
0.8
7
1.4
0
N/A
4
233
22
1
1
26
9
94
35
4
20
11
3
180
0.8
49.1
4.6
0.2
0.2
5.5
1.9
19.8
7.4
0.8
4.2
2.3
0.6
37.9
2
210
27
4
1
16
14
76
21
11
27
33
4
141
0.4
42.5
5.5
0.8
0.2
3.2
2.8
15.4
4.3
2.2
5.5
6.7
0.8
28.6
0
0
0
0
3
1
0
0
0
0
0
0
1
0
N/A
N/A
N/A
N/A
N/A
N/A
N/A
N/A
N/A
N/A
N/A
N/A
N/A
N/A
7
28
37
1.5
5.9
7.8
4
66
18
0.8
13.4
3.6
0
3
0
N/A
N/A
N/A
Birth Defects Surveillance Report: Cumulative Data, 2006-2009
Published 08/2012
10
Defect
Female
N
Rate
Gastrointestinal
Biliary atresia
Esophageal atresia/ tracheoesophageal fistula
Hirshsprung's disease (congenital megacolon)
Pyloric stenosis
Rectal and large intestinal atresia/stenosis
Genitourinary
Bladder exstrophy
Hypospadias and Epispadias
Obstructive genitourinary defect
Renal agenesis/hypoplasia
Musculoskeletal
Congenital hip dislocation
Diaphragmatic hernia
Gastroschisis
Omphalocele
Reduction deformity, lower limbs
Reduction deformity, upper limbs
Chromosomal
Trisomy 13
Trisomy 18
Trisomy 21/Down Syndrome
Other
Fetal Alcohol Syndrome
Total Defects
Male
N
Rate
Unknown
N
Rate
3
15
2
17
20
0.6
3.2
0.4
3.6
4.2
3
14
14
149
13
0.6
2.8
2.8
30.2
2.6
0
0
4
0
0
N/A
N/A
N/A
N/A
N/A
1
2
58
12
0.2
0.4
12.2
2.5
2
243
138
22
0.4
49.2
27.9
4.5
0
0
0
3
N/A
N/A
N/A
N/A
28
8
23
8
1
3
5.9
1.7
4.8
1.7
0.2
0.6
11
18
18
7
7
12
2.2
3.6
3.6
1.4
1.4
2.4
0
0
0
0
1
0
N/A
N/A
N/A
N/A
N/A
N/A
1
15
70
0.2
3.2
14.7
8
6
72
1.6
1.2
14.6
0
1
0
N/A
N/A
N/A
0
1,076
0.0
226.7
0
1,497
0.0
303.1
0
17
N/A
N/A
*Numbers of birth defects are not shown in some cases to preserve data privacy.
**Hypospadias and epispadias: prevalence per 10,000 male births.
Table 4: Chromosomal anomaly counts and prevalence rates for Hennepin and Ramsey
counties; 2006 – 2009 births. Rates are per 10,000 live births.
Defect
Chromosomal
Trisomy 21/
Down Syndrome
Trisomy 13/
Patau Syndrome
Trisomy 18/
Edwards Syndrome
Maternal
Age <35
N
Maternal
Age <35
Rate
Maternal
Age 35+
N
Maternal
Age 35+
Rate
82
10.3
61
6
0.75
15
1.88
Total
Total
N
Rate
35.6
143
14.8
3
1.75
9
0.93
6
3.50
21
2.17
Birth Defects Surveillance Report: Cumulative Data, 2006-2009
Published 08/2012
11
Discussion/Data Summary
Comparison with national data and other state data
In general, the prevalence rates for birth defects in Hennepin and Ramsey counties for 20062009 were similar to rates observed in other individual states (2). However, there are limitations
on making comparisons in birth defect prevalence rates between individual states. Differences in
surveillance methodology, active vs. passive surveillance for example, may lead to differences in
calculated prevalence rates, even when the true rate in the population is the same. Active
surveillance may identify defects that are not fully identified using passive surveillance, or may
rule out some defects reported through passive surveillance after further review of the medical
record.
The prevalence rates for Hennepin and Ramsey counties for 2006-2009 were also similar to
pooled data for 21 selected defects from 24 states using data from 2004-2006 births, and were
similar to adjusted national estimates calculated using these data from 14 states and adjusted to
match the U.S. birth population 2004-2006 (3). There were a few exceptions. Hennepin and
Ramsey county rates were somewhat higher than adjusted national estimates for some defects,
including Down syndrome (14.8 per 10,000 births in Hennepin/Ramsey compared with 13.6 in
pooled national data), Transposition of the great arteries (4.5 in Hennepin/Ramsey and 3.0 in
pooled national data), and Tetralogy of Fallot (4.9 in Hennepin/Ramsey and 4.0 in pooled
national data). Prevalence rates were lower for some defects, including upper and lower limb
reductions (1.5 and 0.8, respectively, in Hennepin/Ramsey and 3.5 and 1.7, respectively, in
pooled national data), anencephaly (0.8 in Hennepin/Ramsey and 2.1 in pooled national data),
anophthalmia/microphthalmia (0.8 in Hennepin/Ramsey and 1.9 in pooled national data) and
rectal and large intestinal atresia/stenosis (3.4 in Hennepin/Ramsey and 4.7 in pooled national
data).
There are limitations in making comparisons in birth defect prevalence between Hennepin and
Ramsey counties and either the pooled estimates from 21 states or the adjusted national estimates
from 14 selected states, as the population of Hennepin and Ramsey counties may differ from the
selected states and the national population in terms of maternal age, race/ethnicity, or other risk
factors. Differences in the distribution of mothers’ ages in populations may affect the rate of
certain birth defects, especially chromosomal anomalies. Risk for some defects is greater for
older mothers (e.g. Down syndrome) while risk for other defects is higher for younger mothers
(e.g. gastroschisis). Adjustment for maternal age is therefore important for comparing population
rates of defects, especially chromosomal anomalies.
Completeness of case ascertainment is another potential source of differences in prevalence
rates. Minnesota does not include stillbirths or pregnancy terminations in its case ascertainment.
Only live births are included. States that include stillbirths and terminations will have higher case
counts and higher prevalence rates due to their ability to identify fetuses with birth defects that
are not born live. Pooled national data for 2004-2006 showed a higher prevalence for selected
defects when stillbirths and terminations are included in case ascertainment (3).
Birth Defects Surveillance Report: Cumulative Data, 2006-2009
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Comparison among race/ethnicity and gender groups within Hennepin and Ramsey Counties
Differences in rates were observed between race and ethnicity groups (Table 2). For most
defects, numbers of prevalent cases were too small to make statistical comparisons using these
differences. The six most common birth defects tracked in Hennepin and Ramsey counties were
relatively minor defects that normally do not require long-term medical intervention, including
minor heart defects (atrial septal defect, ventricular septal defect, and patent ductus arteriosus),
hyspadias and epispadias, obstructive genitourinary defect, and pyloric stenosis (Table 1). For
these six most common defects, numbers were high enough to make comparisons. For the three
most common heart defects, rates were higher in the Black and Hispanic groups than the other
groups. Findings from previous studies are inconsistent regarding the prevalence of heart defects
in different race/ethnicity groups. The rates for hypospadias and epispadias, and pyloric stenosis
were highest in the White group, which is consistent with previous studies (4, 5). Rates for
obstructive genitourinary defect were generally similar among the race and ethnicity groups.
The prevalence rates for most conditions were generally similar between females and males, with
a few notable exceptions (Table 3). Pyloric stenosis and obstructive genitourinary defects were
more common in males than females, which is consistent with previous research (6, 7, 8).
Congenital hip dislocation was more common in females, which has also been observed
previously (9).
For Hennepin and Ramsey county data the prevalence rate of chromosomal anomalies was
higher for mothers 35 years or older when compared with mothers less than 35 year of age
(Table 4). Previous research has documented increased risk for Down syndrome and other
chromosomal anomalies with higher maternal age (10, 11, 12).
An important limitation in making comparisons using Hennepin and Ramsey county data is the
low case counts for individual conditions. Many birth defects are rare, and numbers of prevalent
cases are small, especially when broken down by race and ethnicity. Random chance differences
in only a few cases could lead to very different calculated rates.
Other Resources for Minnesota Birth Defects Information:
Environmental Public Health Tracking (EPHT)
The Birth Defects Program collaborates closely with the Minnesota and National Environmental
Public Health Tracking (EPHT) programs. The MN EPHT Program gathers and analyzes data
about environmental health hazards, people's exposure to hazards, and health effects. Birth
defects are one of the included health effects. The national and state EPHT programs focus on a
subset of 12 birth defects that have a known or potential relationship to environmental exposures.
The MN Birth Defects Program prepares summary data to share with the national EPHT
program. These data are then displayed in summary form including charts and tables on the state
data site, MN Public Health Data Access (https://apps.health.state.mn.us/mndata/). Minnesota
data are not yet displayed on the national portal; the national EPHT data site is available at
National Environmental Public Health Tracking Network
(http://ephtracking.cdc.gov/showHome.action).
Birth Defects Surveillance Report: Cumulative Data, 2006-2009
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Further information about the MN EPHT program may be found at MN Environmental Public
Health Tracking (http://www.health.state.mn.us/divs/hpcd/tracking/index.html).
What happens next for families?
After the birth defects program identifies a child with a validated a birth defect, the parents are
sent a letter describing birth defects surveillance in Minnesota, including a phone number to call
for more information, and an opt-out form. For children born between 2006 and 2009,
approximately 4% of families chose to opt out of the system, meaning their personal identifying
information was removed. For opt-out children, birth defect case information was retained in the
system for analysis. The rate of opt-out was not significantly different between the broad classes
of birth defects. For families that do not choose to opt out, their information is provided to local
public health agencies to ensure families are referred for appropriate services. Further
information about birth defects service activities is available in the companion Services report.
For more information:
Birth Defects Monitoring & Analysis Unit
P.O. Box 64882
St. Paul, MN 55164-0882
Telephone: 1-855-860-0088
TTY number: 651-201-5797
Email: [email protected]
References
1. National Birth Defects Prevention Network (NBDPN) guidelines for birth defects
surveillance (http://www.nbdpn.org/birth_defects_surveillance_gui.php).
2. Birth Defects Research (Part A): Clinical and Molecular Teratology 91:1028-1149 (2011).
3. Birth Defects Research (Part A): Clinical and Molecular Teratology 88:1008-1016 (2010).
4. Epidemiology 14(6):701-6. (2003).
5. Paediatric and Perinatal Epidemiology 11(4):407-27. (1997).
6. American Journal of Epidemiology doi: 10.1093/aje/kwr493. (2012)
7. Birth Defects Research (Part A): Clinical and Molecular Teratology 73:876–880 (2005).
8. Kimberly Washburn Pieplow, "Epidemiology of isolated obstructive genitourinary defect in
Texas: 1999--2003" (January 1, 2009). Texas Medical Center Dissertations (via ProQuest).
Paper AAI1462474. http://digitalcommons.library.tmc.edu/dissertations/AAI1462474
9. ISRN Orthopedics, Volume 2011 (2011), Article ID 238607, 46 pages,
doi:10.5402/2011/238607.
10. Journal of Medical Genetics 35(6): 482–490. (1998).
11. Birth Defects Research (Part A): Clinical and Molecular Teratology 67(9):625-629. (2003).
12. Obstetrics and Gynecology. 105(5), Part 1, 983-990. (2005).
Birth Defects Surveillance Report: Cumulative Data, 2006-2009
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Appendix: Minnesota Birth Defects Coding List
CDC/BPA Codes*
Defect
Central Nervous System
Anencephalus
740.00-740.10
Encephalocele
742.00-742.09
Hydrocephalus without spina bifida
742.3-742.39 w/o 741.00-741.99
Microcephalus
Spina bifida without anencephalus
742.10
741.00-741.99 w/o 740.00-740.10
Eye
Aniridia
Anophthalmia/microphthalmia
Congenital cataract
743.42
743.00-743.10
743.320-743.326
Ear
Anotia/microtia
744.01,744.21
Cardiovascular
Aortic valve stenosis
Atrial septal defect
746.30
745.50-745.59, excl. 745.50
Coarctation of aorta
747.10-747.19
Common truncus
745.00-745.01
Ebstein's anomaly
746.20
Endocardial cushion defect
745.60-745.69
Hypoplastic left heart syndrome
746.70
Patent ductus arteriosus
747.00
Pulmonary valve atresia and stenosis
Single Ventricle
Tetralogy of Fallot
Transposition of great arteries
Tricuspid valve atresia and stenosis
Ventricular septal defect
746.00-746.01
#
N/A
745.20-745.21,746.84
745.10-745.19
746.10, excl. 746.105
745.40-745.59, excl. 745.498
Orofacial
Choanal atresia
748.00
Cleft lip with and without cleft palate
749.10-749.29
Cleft palate without cleft lip
749.00-749.09
Gastrointestinal
Biliary atresia
751.65
Esophageal atresia/tracheoesophageal fistula
750.30-750.35
Hirshsprung's disease (congenital megacolon)
751.30-751.34
Pyloric stenosis
Rectal and large intestinal atresia/stenosis
750.51
751.20-751.24
Birth Defects Surveillance Report: Cumulative Data, 2006-2009
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Defect
CDC/BPA Codes*
Genitourinary
Bladder exstrophy
Hypospadias and Epispadias
Obstructive genitourinary defect
Renal agenesis/hypoplasia
753.50
Hypospadias 752.600752.607,752.620,
752.605-752.607
Epispadias 752.61
753.20-753.29,753.60-753.69
753.00-753.01
Musculoskeletal
Congenital hip dislocation
Diaphragmatic hernia
754.30
756.610-756.617
Gastroschisis
756.71
Omphalocele
756.70
Reduction deformity, lower limbs
755.30-755.39
Reduction deformity, upper limbs
755.20-755.29
Chromosomal
Trisomy 13
758.10-759.19
Trisomy 18
758.20-758.290
Trisomy 21/Down Syndrome
758.00-758.09
Other
Fetal Alcohol Syndrome
760.71
*
CDC/BPA Codes: Codes are based on the 1979 British Pediatric Association (BPA)
Classification of Diseases and the World Health Organization's 1979 International Classification
of Diseases, 9th Revision, Clinical Modification (ICD-9-CM). Code modifications were
developed by the Division of Birth Defects and Developmental Disabilities, National Center on
Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention.
#
Single ventricle: CDC/BPA codes for single ventricle are currently in development by the Birth
Defects Work Group.
Birth Defects Surveillance Report: Cumulative Data, 2006-2009
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