Content uploaded by Boris Groisman
Author content
All content in this area was uploaded by Boris Groisman on Jun 24, 2018
Content may be subject to copyright.
Arch Argent Pediatr 2013;111(6):484-494 / 484
RENAC: National Registry of Congenital
Anomalies in Argentina
Boris Groisman, M.D.,a María Paz Bidondo, M.D.,a Pablo Barbero, M.D.,a
Juan A. Gili, B.S.,b Rosa Liascovich, M.D.,a and RENAC Task Forcec
ABSTRACT
Introduction.The National Registry of Congenital
Anomalies (Registro Nacional de Anomalías
Congénitas, RENAC) is a hospital-based
surveillance system for newborn infants with
major morphological congenital anomalies
(CAs). The objective of this study was to describe
the characteristics and operation of the RENAC
registry and the prevalence at birth of 56 specific
selected CAs, compared to other registries.
Population and Methods.The organization of the
RENAC registry was initiated in public hospitals
with 1000 or more births per year or which are
the referral hospitals in a determined health
region. Neonatologists are in charge of data
collection, and a central coordination department
is in charge of encoding, statistical analyses and
regular reports.
The RENAC registry uses an online forum for
data submission and for guidance and interaction
regarding the initial management of cases.
Results. Between November 1st, 2009 and June
30th, 2012, 98 hospitals were included in the
registry, the annual coverage of these hospitals
is 65% in the public sector and 35% of births in
Argentina. In this period, 294 005 newborn infants
were examined, and 5165 cases with major CAs
were detected (1.76%; 95% CI: 1.71-1.80). The
most frequent CAs were septal heart defects
(prevalence per 10 000: 28.6), Down’s syndrome
(prevalence per 10 000: 19.2), cleft lip +/- palate
(prevalence per 10 000: 12), and a set of neural
tube defects (prevalence per 10 000: 11.9).
Conclusions.The RENAC has reached a high
coverage in the public sector and the differences
in prevalence with other registries can be related
to operational aspects or actual differences,
depending on the case. The RENAC deals with
the collection, analysis and dissemination of
information about CAs in Argentina, and also
contributes with local interventions.
Key words: Argentina, congenital anomalies,
information systems, registries, health surveillance.
http://dx.doi.org/10.5546/aap.2013.484
INTRODUCTION
Congenital anomalies (CAs)
are morphological or functional
alterations of prenatal etiology
which are present since birth, even if
detected later in life.1 The prevalence
of CAs in newborn infants ranges
between 3% and 5%, and they can
be classified as major or minor.2
Major CAs have a significant effect
on health and generally require
medical or surgical treatment (e.g.,
cleft lip and palate, gastroschisis,
Down’s syndrome); minor CAs are
clinical signs with no implications
on health (e.g., prominent ears,
epicanthal fold, preauricular sinus).
With the management of infectious
and nutritional diseases, the relative
significance of CAs in child mortality
has increased.3 CAs accounted for 11%
in 1980, for 25% in 2010, and are now
the second cause of child mortality in
Argentina.4
CAs have a varied etiology, and
50% of them are still of unknown
origin.5 The known causes include
mutations in a major gene or
chromosomal anomalies, prenatal
exposure to teratogenic factors,
and the effect of predisposing
genes expressed when triggered by
environmental factors. Traditionally,
CAs were regarded as “non-
reducible;” however, there are
multiple preventive actions that can
be applied throughout the different
stages of life.8,9
CAs are individually uncommon
events, and therefore epidemiological
studies require a large number of
individuals.
For this reason, CA surveillance
systems with large databases, an
adequate level of diagnosticquality
and continuous operation over time
are useful for studying causative
agents, such as environmental
pollutants, nutritional factors or
maternal diseases.
Such systems first appeared in the
1960s, after the so-called “thalidomide
tragedy,”10 and their initial objective
was to closely monitor any change in
a. National Genetic
Medical Center
NationalAdministration
of Health Institutes
and Labs (Ministry of
PublicHealth).
b. Latin-American
Collaborative Study
of ECLAMC-CEGEBI-
CEMIC.
c. Members of the Task
Force, participants
of the National
Registry of Congenital
Anomalies who
made contributions
to the study (see
the Acknowledgment
section).
E-mail Address:
Boris Groisman, M.D.:
bgroisman@gmail.com
Funding
The study was partially
funded by the Comisión
Nacional Salud Investiga,
through a Carrillo-
Oñativia scholarship for
2011, and the Plan Nacer.
Conflict of Interest:
None.
Received: 04-15-2013
Accepted: 06-14-2013
Original article
RENAC: National Registry of Congenital Anomalies in Argentina / 485
prevalence, for the early detection and prevention
of any similar epidemics. Since that time, the
objectives of surveillance have widened their
scope. Now objectives include the comparison of
regions, the analysis of trends or the discovery of
new determining factors, and also the evaluation
of prevention strategies, the interconnection
of patients with healthcare services, and the
collaboration in resource allocation.11-13
In Argentina, deaths caused by CAs are
reported in the Death and Fetal Death Statistical
Reports. However, Live Birth Statistical Reports
do not include information on CAs, and
although the Perinatal Information System
does include CAs, it establishes that only
one anomaly can be coded per child, selected
from a predefined, non comprehensive list
of options.14 In addition, several Argentine
hospitals are part of the Latin-American
Collaborative Study of Congenital Malformations
EstudioColaborativoLatinoamericano de
Malformaciones Congénitas, ECLAMC), a
voluntary network of South American maternity
centers with a case and control design.15 Although,
for decades, data provided by the ECLAMC was
the only epidemiological information available, its
coverage is not wide and its design is operatively
complex. The relative increase of CAs in child
mortality, that we mentioned above, and the lack
of statistical tools for establishing their prevalence
were determining factors for the creation of
a national registry, in addition to the need of
information to evaluate recent warning signs
indicative of a relationship between CAs and
environmental pollutants. In this context, and
prior to conducting a feasibility pilot study,16the
National Registry of Congenital Anomalies
(RegistroNacional de Anomalías Congénitas
de Argentina, RENAC) was organized in 2009
within the framework of the “National Genetic
Medicine Network” Program of the National
Ministry of Health, which is coordinated by
the National Genetic Medical Center (Centro
Nacional de GenéticaMédica, CNGM and the
National Administration of Health Institutes and
Lab (ANLIS).
The objective of this study was to describe
the characteristics and operation of the RENAC
registry and the prevalence at birth of 56 specific
selected CAs, compared to other registries.
POPULATION AND METHODS
Material
The target population of the RENAC is made
up of all newborn infants born in Argentina. This
study was restricted to the data reported by the
first 98 hospitals included in the study between
November 1st, 2009 and June 30th, 2012.
The case definition was that of newborn
infants with major morphological CAs, whether
external or internal, identified from birth until
hospital discharge and detected during physical
examination or using supplementary tests,
interventions or an autopsy. The definition
includes all live newborn infants and stillbirths
with a weight of 500 g or more, and excludes
those who have only minor or functional CAs
(e.g., hearing loss).
Methods
Data collection (Figure 1) is done using a
form attached to the medical record of women
hospitalized to give birth, on which the presence
of a congenital anomaly in the newborn infant is
recorded. If the infant has a CA, this is described
and additional outcome measures are filled in
as per the standard procedures indicated in
an operational manual. The RENAC’s team in
every hospital is made up of two neonatologists
or a neonatologist and a member of the health
team. At the end of each month, they retrieve
all cases of congenital anomalies and enter the
data in an electronic file, including the total
number of live births and stillbirths for that
month. Using a web site hosted at Amazon
Web Services and thevBulletin 4 software, with
a password-restricted access to participants,
the electronic file is sent to the coordination
department, made up of four professionals
from the CNGM (authors BG, MPB, PB and RL),
with the help of a professional who provides
statistical support (author JAG). The coordination
department reviews the quality of descriptions
and compliance with the inclusion of additional
outcome measures, and corrections are made if
the information provided is incomplete or not
clear.
CA coding is the responsibility of geneticists,
and it is performed as per the International
Classification of Diseases 10th Revision,
adapted by the British Pediatric Association.17
Following the analysis, data are disseminated
to participating hospitals and health authorities
(Figure 1).
The RENAC’s web site is organized as a
communication system with forums. Each
responsible team uses a hospital exclusive
forum to submit data and the coordination
486 / Arch Argent Pediatr 2013;111(6):484-494 / Original article
department makes the necessary corrections; the
forums common to all hospitals are used to solve
operational problems, discuss selected cases and
publish academic resources. Each neonatologist
has a profile with their name and picture, and
they can access the web site at any time to submit
questions or comments. At the same time, forum
exchanges are made in a clinical context and to
provide guidance on the initial management
of affected newborn infants. Depending on the
case, pictures and additional tests are submitted
to the forum and analyzed, once the parents’
informed consent is obtained. Additionally, the
coordination department helps to refer cases to
genetic departments and submit samples for lab
tests.
Analysis
Newborn infants with congenital anomalies
were classified as follows: isolated or multiple
CAs or CA syndromes, sequences or associa-
tions; sex; status at birth; twin pregnancy; status
at the time of data submission; gestational age;
weight; and maternal age. The percentage of to-
tal newborn infants and the prevalence per 10 000
individuals were calculated for 56 specific CAs
selected based on their clinical significance, their
impact on morbidity and mortality, or the pres-
ence of at least 5 reports. Prevalences were cal-
culated as per Poisson’s distribution, with a 95%
confidence interval, and were compared to those
obtained by the Consortium of the European Sur-
veillance of Congenital Anomalies(EUROCAT)
(2005-2009 period)18 and those obtained by the
ECLAMC (2005-2007 period).9 For each specific
CA, a “Z” value was obtained using the RENAC
as a reference (expected value) and the ECLAMC
(Z1) and EUROCAT (Z2) as comparator values
(observed value) [Z= (observed value-expect-
ed value)/ root(expected value)]. The statistical
significance was established using Bonferroni’s
correction for multiple comparisons, in Z= ±3.5,
corresponding to a p value of 0.00025. The Stata
statistical software was used.
Figure 1. RENAC’s operation
RENAC: National Registry of Congenital Anomalies in Argentina / 487
RESULTS
Figure 2 summarizes the activities performed
in relation to the RENAC organization. A total of
98 hospitals were included and the coordination
department was expanded to four CNGM
members. The National Ministry of Health
committed to printing products (reports) and
supplies (forms, operational manual) and to
providing funds for annual meetings. These
meetings were attended by neonatologists,
members of other health programs, clinical
geneticists and health authorities; annual
reports were presented and electronic databases
and individual reports were delivered to the
responsible teams from each hospital. Also,
personal interaction was encouraged, new
members were trained, clinical cases were
discussed, and awards were given for the timely
input of data, the quality of descriptions, the
use of local data and the submission of cases for
discussion in the web forum. Figure 3 summarizes
the main characteristics of the RENAC as per the
attributes used to evaluate surveillance systems.19
The 98 hospitals were progressively included
(Table 1 and Figure 2), until a 65% annual coverage
of the public subsector and 35% of all births in
Argentina were reached. Between November 1st,
2009 and June 30th, 2012, 294 005 newborn infants
were examined and 5743 cases of congenital
anomalies were reported.
Of these, 5165 had major CAs (positive
predictive value= 89.94%); the remaining 578
cases (10.06% false positive cases) were newborn
infants who did not meet the inclusion criteria.
Table 1.Coverage evolution of the RENAC according to jurisdiction
Jurisdictions RENAC Total estimated Annual coverage of RENAC Annual coverage of RENAC
annual births
a
for the total number of births
b
of births in the public sector
b
2009 2010 2011 2012 2009 2010 2011 2012 2009 2010 2011 2012
Buenos Aires 23 409 51 737 100 670 0% 10% 21% 40% 0% 15% 36% 69%
CABA 28 938 30 561 30 849 0% 35% 36% 36% 0% 86% 87% 91%
Catamarca 2224 2378 2390 0% 33% 35% 37% 0% 67% 68% 67%
Chaco 4698 5538 5655 5550 21% 25% 25% 23% 32% 38% 37% 33%
Chubut 2420 2212 0% 0% 25% 23% 0% 0% 62% 56%
Córdoba 14 852 15 426 0% 0% 25% 27% 0% 0% 56% 59%
Corrientes 2856 3167 3111 3258 14% 16% 15% 16% 22% 23% 23% 24%
Entre Ríos 6544 7364 0% 0% 29% 33% 0% 0% 56% 64%
Formosa 3240 3282 3295 3420 27% 28% 28% 28% 39% 40% 41% 41%
Jujuy 3908 3736 3728 0% 30% 28% 27% 0% 44% 41% 40%
La Pampa 1864 2172 0% 0% 34% 41% 0% 0% 65% 83%
La Rioja 1844 2062 0% 0% 31% 33% 0% 0% 63% 68%
Mendoza 8724 9168 0% 0% 26% 27% 0% 0% 51% 54%
Misiones 4500 4963 5139 5660 18% 19% 21% 26% 32% 33% 35% 45%
Neuquén 2544 2618 0% 0% 21% 23% 0% 0% 37% 42%
Río Negro 2104 1980 0% 0% 17% 16% 0% 0% 31% 29%
Salta 8324 8585 11 602 0% 32% 31% 41% 0% 47% 45% 60%
San Juan 6860 7312 0% 0% 48% 51% 0% 0% 90% 94%
San Luis 2100 2102 0% 0% 27% 27% 0% 0% 53% 54%
Santa Cruz 1084 1128 0% 0% 18% 19% 0% 0% 24% 25%
Santa Fe 4824 17 414 20 594 0% 9% 33% 38% 0% 19% 69% 81%
Santiago del Estero 5844 6373 6736 0% 32% 38% 39% 0% 44% 54% 56%
Tierra del Fuego 1421 1528 0% 0% 57% 61% 0% 0% 100% 100%
Tucumán 9148 16 233 17 606 0% 32% 53% 58% 0% 56% 92% 100%
Total RENAC 15 294 103 569 206 578 267 135 2% 14% 27% 35% 4% 25% 50% 65%
a. The RENAC total number of annual births in each jurisdiction was calculated based on an estimation of annual births
occurred in each jurisdiction hospitals.
b. For each year, coverage is estimated based on the total number of births reported by the DEIS for the previous year.
488 / Arch Argent Pediatr 2013;111(6):484-494 / Original article
Incorporación
de hospitales
Inician 4 hospitales de
la región NEA
27 nuevos hospitales:
22 región Centro
5 región NOA
Total: 31 hospitales
47 nuevos hospitales:
29 región Centro
11 región Patagonia
4 región Cuyo
2 región NOA
Total: 78 hospitales
21 nuevos hospitales
en la región Centro
Total: 98 hospitales
Estructura y
Actividades
RENAC
•Dos integrantes en la
coordinación.
•Diseño e impresión
del Formulario.
•1º Encuentro Anual de
capacitación.
•Incorporación del
Manual Operativo.
•Implementación de la
comunicación
mediante Foro-online.
•2º Encuentro Anual de
capacitación.
•La coordinación pasa
de 2 a 3 integrantes; se
incorpora 1 profesional
externo y 1
administrativo.
•Actualización del
Manual Operativo.
•Presentación del
primer Reporte Anual.
•Capacitaciones
regionales.
•3º Encuentro Anual de
capacitación.
•La coordinación pasa
de 3 a 4 integrantes.
•Nueva actualización
del Manual Operativo.
•Segundo Reporte
Anual.
•Afiche con flujograma
que se distribuye en
los hospitales.
•Inicio de proyectos de
investigación
especiales.
•Incorporación del
RENAC como miembro
de la International
Clearinghouseof Birth
DefectsSurveillance
and Research -
ICBDSR.
•4º Encuentro Anual de
capacitación.
2%
14%
27%
35%
4%
25%
50%
65%
0%
10%
20%
30%
40%
50%
60%
70%
2009 2010 2011 2012
Total Argentina
Sector público
Figure 2. RENAC’s activities and coverage evolution of births monitored in the first 98 hospitals (from November 1st, 2009
to June 30th, 2012)
Total Argentina
Public sector
Hospital inclusion 4 hospitals from the 27 new hospitals: 47 new hospitals: 21 new hospitals
Northeast Region start 22 hospitals from the 29 hospitals from the in the Central Region
Central Region Central Region Total: 98 hospitals
5 hospitals from the 11 hospitals from Patagonia
Northwest Region 4 hospitals from
Total: 31 hospitals the Cuyo Region
2 hospitals from the
Northwest Region
Total: 78 hospitals
Structure and •Two members in the •Inclusion of the •The coordination •The coordination
activities of the coordination department operational manual department increases department
RENAC •Form design and printing •Communication from 2 to 3 members; increases from 3
•1st Annual implementation through with 1 external and 1 to 4 members.
Training Meeting an online forum professional •New update of
•2nd Annual administrative member the operational
Training Meeting •Update of the manual.
operational manual •Second Annual Report
•Submission of the •Diagram ow poster
first Annual Report distributed to the
•Regional training hospitals
•3rd Annual Training •Initiation of special
Meeting research projects.
•Inclusion of the
RENAC as member of
the International
Clearinghouse of Birth
Defects Surveillance
and Research - ICBDSR
•4th Annual Training
Meeting.
RENAC: National Registry of Congenital Anomalies in Argentina / 489
Figure 3. Health surveillance systems’ attributes and RENAC’s characteristics
Attribute Definition Characteristics of the RENAC Registry
Simplicity It refers to the structure and ease of It includes a single source of data and does not require
operation of the registry. A surveillance case follow-up; exposure factors are not assessed.
system has to be as simple as possible Case confirmation is based on the neonatologists’ clinical
without leaving its objectives behind. judgment and is supported by routine supplementary
tests. Additional outcome measures are obtained from
medical records and do not require interviewing mothers.
Acceptability It reects individuals’ will and the agreement The appointment of responsible teams was agreed upon
of organizations to take part in the by neonatologists who were willing to participate and
surveillance system. local authorities.
The reporting and communication system is useful in
the clinical context.
Flexibility It refers to the system’s capability to adapt to No changes were made in the definition of case,
any change in relation to information needs additional sources of data or technological resources,
or operation conditions without taking up but the original form has been recently amended to
additional time, resources or funding. include new outcome measures in a seamless fashion.
Quality of data It reects the completeness and validity of An open description eld is used to characterize
data recorded in the surveillance system. congenital anomalies, thus allowing an interpretation
process before coding the event. This would not be
possible if a predefined list of options was used because
it usually does not include less frequent CAs and it is an
obstacle for the inclusion of multiple CAs
A centralized coding by geneticists warrants technical
suitability and criteria homogeneity.
Sensitivity It refers to the proportion of cases with a The data collection process at the RENAC registry starts
disease detected by the surveillance system. by attaching the form to the mother’s medical record,
In addition, it may refer to the power of the thus ensuring case detection right at the labor room.
system to detect epidemics by monitoring any Including multiple sources of data (children hospitals,
change in the number of cases over time. genetic medicine departments, etc.) so as to increase
sensitivity may make the system more complex
(longer time, higher cost) and threaten its stability.
It cannot be estimated because there is no Gold Standard
for sensitivity. However, it has been observed that the
prevalence of specific CAs observed by the RENAC is
similar to that of other registries.
Positive It is the proportion of reported cases that In the November 2009-June 2012 period, the observed
Predictive Value actually have the health event under surveillance. positive predictive value was 89.94%
Representativity It is the capacity to accurately describe. In Argentina, 99.4% of births take place in a health facility;
the event over time and its distribution in the therefore, the number of lost cases is negligible.
population by place and by subject. It is possible that the prevalence is overestimated due to
the referral of cases detected at smaller health facilities
or hospitals by antenatal ultrasonography. However, it is
expected that such effect will be reduced as maternity
centers are regionalized and as smaller maternity
centers are included.
At present, the RENAC registry is restricted to hospitals in
the public subsector; as a consequence, there is a selection
bias resulting from the systematic exclusion of a
population sector.
Opportunity It reects the speed at which each step in a The time elapsed from the occurrence of a health event
public health surveillance system takes place. until it is reported is usually one month, followed by a
request for corrections, coding and analysis.
In the case of potentially life-threatening events,
ambiguous genitalia or multiple CAs, neonatologists
report and contact the coordination department through
the web forum immediately after birth takes place.
Stability It refers to the capacity of adequately collecting, Since its creation, the RENAC registry has been
managing and providing data, and also to a continuously operating. People in charge of reporting
sustained operation. events are part of the hospitals’ full-time staff.
The coordination department increased from two to four
members, and operates as an institution of the CNGM.
The RENAC registry has progressively included hospitals
and has received funds from the National Ministry of
Health, these funds are allocated to annual training
meetings, printing forms, operational manuals and reports.
490 / Arch Argent Pediatr 2013;111(6):484-494 / Original article
Table 2. Characteristics of cases with major congenital anomalies as per different outcome measures. RENAC, November
2009 - June 2012
Outcomemeasure Categories Cases Percentage
Classification* Isolated 3418 66.18
Multiple congenital anomalies 866 16.77
Syndromes, sequences or associations 858 16.61
UN 23 0.45
Sex Male 2701 52.29
Female 2341 45.32
Undetermined 103 1.99
UN 20 0.39
Status at birth Alive 4927 95.39
Deceased 234 4.53
UN 4 0.08
Twin pregnancy Twin 182 3.52
Nottwin 4753 92.02
UN 230 4.45
Status at the time Discharged alive 3438 66.56
of data submission Discharged deceased 963 18.64
Still hospitalized 726 14.06
UN 38 0.74
Gestational age <37 weeks 1456 28.19
≥37 weeks 3452 66.83
UN 257 4.98
Weight <2500 g 1608 31.14
≥2500 g 3540 68.54
UN 17 0.33
Maternal age <20 1100 21.30
20-24 1468 28.42
25-29 1013 19.61
30-34 740 14.33
35-39 517 10.01
40-44 253 4.90
45+ 35 0.68
UN 39 0.76
*Isolated, when the case presents a single congenital anomaly, or two or more congenital anomalies in the same system organ
class which do not account for a known syndrome, association or sequence.
Multiple, when the case presents major congenital anomalies affecting different, unrelated system organ classes, which do
not correspond to a known syndrome, association or sequence; known syndromes, associations or sequences (e.g., Down’s
syndrome, Patau’s syndrome, Edwards’ syndrome, prune belly sequence, etc.) if they correspond to specific entities.
UN: unspecified.
The classification of cases is presented according
to the different outcome measures (Table 2). The
overall prevalence of major CAs at birth was
1.76% (95% CI: 1.71-1.80).
The prevalence observed for each one of the 56
specific selected CAs is presented together with a
comparison with the data from the ECLAMC and
the EUROCAT (Table 3).
Compared to the ECLAMC, it has been ob-
served that the RENAC has a significantly higher
prevalence of cleft palate, kidney cysts, and sep-
tal and valvular heart defects, and a significant-
ly lower prevalence of hydrocephalus, anorectal
atresia, diaphragmatic hernia, total hypospadias,
preaxialpolydactyly, postaxial polydactyly, talipe-
sequinovarus and talipescalcaneovalgus.
Compared to the EUROCAT, it has been
observed that the RENAC has a significantly
higher prevalence of hydrocephalus, cleft lip +/-
palate, ambiguous genitalia, and gastroschisis,
and a lower prevalence of heart diseases, cleft
palate, hypospadias, unspecified polydactyly,
syndactyly, hip subluxation/dislocation, and
talipesequinovarus.
RENAC: National Registry of Congenital Anomalies in Argentina / 491
Table 3. Prevalence of major selected congenital anomalies at birth (isolated and associated CAs), RENAC, ECLAMC and
EUROCAT
Specific selected CAs RENAC ECLAMCa EUROCATb
N Prevalence CI Prevalence CI Z1 Prevalence CI Z2
x10 000 95% x10 000 95% x10 000 95%
Anencephaly (Q00) 105 3.6 2.9-4.3 3.7 2.4-4.9 0.2 3.6 3.4-3.9 0.1
Encephalocele (Q01) 57 1.9 1.5-2.5 2.0 1.0-2.9 0.1 1.2 1.0-1.3 -3.0
Microcephaly (Q02) 89 3.0 2.4-3.7 3.0 1.8-4.1 -0.2 - - -
Spinabifida (Q05) 189 6.4 5.5-7.4 6.6 4.9-8.4 0.4 5.0 4.7-5.3 -3.1
Hidrocephaly (Q03) 267 9.1 8.0-10.2 11.6 9.3-13.8 4.5 5.8 5.5-6.2 -5.8
Holoprosencephaly (04.1-04.2) 76 2.6 2.0-3.2 - - - - - -
Anophthalmia (Q11.1) 16 0.5 0.3-0.9 - - - - - -
Microphthalmia (Q11.2) 36 1.2 0.9-1.7 - - - - - -
Anotia (Q16.0) 8 0.3 0.1-0.5 - - - 0.4 0.3-0.4 1.0
Microtia (Q17.2) 123 4.2 3.5-5.0 - - - - - -
Anotia + microtia (Q16.0, Q17.2) 131 4.5 3.8-5.3 4.1 2.7-5.4 -0.9 - -
Transposition of the great vessels (Q20.3) 44 1.5 1.1-2.0 - - - 3.4 3.2-3.6 8.3
Tetralogy of Fallot (Q21.3, Q21.82) 66 2.2 1.7-2.9 - - - 3.2 3.0-3.5 3.5
Atrial septal defect (Q21.1-Q21.18) 374 12.7 11.5-14.1 - - - 23.8 23.2-24.5 16.8
Ventricular septal defect (Q21.0) 538 18.3 16.8-19.9 - - - 34.3 33.7-35.2 20.3
Total septal heart defects (Q21.0-Q21.9) 833 28.6 26.7-30.6 15.1 13.7-16.6 -13.5 - - -
Total valvular heart defects (Q22-Q23.9) 213 7.3 6.4-8.4 1.2 0.7-1.9 -12.2 - - -
Hypoplastic left heart (Q23.4) 45 1.5 1.1-2.1 - - - 2.8 2.5-3.0 5.3
Aorta coarctation (Q25.1-Q25.19) 46 1.6 1.2-2.1 - - - 3.6 3.3-3.8 8.6
Choanal atresia (Q30.0) 9 0.3 0.1-0.6 - - - - - -
Cleft palate (Q35) 95 3.2 2.6-4.0 1.6 0.7-2.4 -5.1 6.0 5.7-6.3 8.2
Cleft lip +/- palate (Q36-Q37) 352 12.0 10.8-13.3 10.8 8.6-13.0 -1.8 9.4 9.1-9.9 -4.0
Esophageal atresia (Q39.0-Q39.11) 98 3.3 2.7-4.1 3.3 2.1-4.5 -0.1 2.4 2.2-2.6 -2.8
Intestinal atresia (Q41.1-Q41.9) 47 1.6 1.2-2.1 - - - - - -
Duodenal atresia (Q41.0) 49 1.7 1.2-2.2 1.1 0.4-1.9 -2.2 - - -
Anorectal atresia (Q42.0-Q42.3) 104 3.5 2.9-4.3 5.6 4.0-7.2 6.0 3.0 2.8-3.2 -1.5
Diaphragmatic hernia (Q79.0-Q79.01) 98 3.3 2.7-4.1 4.9 3.4-6.4 4.8 2.7 2.5-2.9 -1.9
Cryptorchidism (Q53.2) 23 0.8 0.5-1.2 - - - - - -
UN cryptorchidism (Q53.0, Q53.9) 9 0.3 0.1-0.6 - - - - - -
Ambiguousgenitalia (Q56.4) 69 2.4 1.8-3.0 2.0 1.0-2.9 -1.4 0.7 0.6-0.8 -5.9
Hypospadias (Q54.1-Q54.3) 7 0.2 0.1-0.5 - - - - - -
UN hypospadias (Q54.9) 37 1.3 0.9-1.7 - - - - - -
Total hypospadias (Q54) 44 1.5 1.1-2.0 4.7 3.3-6.2 14.2 17.7 17.2-18.3 71.8
Bilateral renal agenesis (Q60.1) 33 1.1 0.8-1.6 - - - 1.2 1.0-1.3 0.3
Renal cysts (Q61.1-Q61.90) 144 4.9 4.1-5.8 3.2 2.0-4.4 -4.2 - - -
Epispadias (Q64.0) 8 0.3 0.1-0.5 - - - - - -
Bladder exstrophy (Q64.1) 7 0.2 0.1-0.5 - - - - - -
Hip subluxation or dislocation (Q65) 66 2.2 1.7-2.9 2.8 1.7-4.0 2.2 7.3 7.0-7.7 18.4
Talipes calcaneovalgus (Q66.4) 51 1.7 1.3-2.9 2.8 1.7-4.0 4.6 - - -
Talipes equinovarus (Q66.0) 205 7.0 6.1-8.0 14.3 11.7-16.8 15.0 10.8 10.4-11.3 7.8
UN talipes (Q66.8) 117 4.0 3.3-4.8 - - - - - -
Preaxial polydactyly (Q69.00, Q69.1, Q69.20) 48 1.6 1.2-2.2 4.0 2.6-5.3 10.2 - - -
Postaxial polydactyly (Q69.02, Q69.22) 155 5.3 4.5-6.2 9.9 7.6-11.8 11.0 - - -
UN polydactyly (Q69.9) 14 0.5 0.3-0.8 0.4 0.1-0.8 -0.5 9.2 8.8-9.6 68.4
Syndactyly (Q70.0-Q70.30, Q70.4-Q70.90) 122 4.2 3.5-5.0 3.8 2.5-5.1 -1.0 5.5 5.2-5.9 3.7
Transverse limb defect (Q71.2-Q71.30) 93 3.2 2.6-3.9 2.0 1.1-3.0 -3.5 - - -
Preaxial limb defect (Q71.31, Q72.5) 52 1.8 1.3-2.3 1.2 0.5-2.0 -2.2 - - -
Postaxial limb defect (Q71.5, Q72.6) 13 0.4 0.2-0.8 - - - - - -
Intercalary limb defect (Q71.1, Q73.1) 1 0.1 0.0-0.2 - - - - - -
UN limb defect (Q71.8-Q71.9, Q72.8-Q72.90) 75 2.6 2.0-3.2 - - - - - -
Omphalocele (Q79.2) 86 2.9 2.3-3.6 3.7 2.4-5.0 2.5 2.9 2.7-3.1 0.0
Gastroschisis (Q79.3) 262 8.9 7.9-10.1 7.4 5.6-9.3 -2.7 2.9 2.7-3.1 -11.0
Prunebelly sequence (Q79.4) 17 0.6 0.3-0.9 - - - - - -
Down’s syndrome (Q90) 563 19.2 17.6-20.8 18.5 15.6-21.3 -0.8 20.9 20.4-21.6 2.2
Trisomy 13 (Q91.4-Q91.7) 15 0.5 0.3-0.8 - - - - - -
Trisomy 18 (Q91.0-Q91.3) 38 1.3 0.9-1.8 - - - - - -
a. López Camelo, et al., 2010.
b. Data accessed from http://www.eurocat-network.eu/
Z1: Z value obtained by comparing the frequencies observed by ECLAMC vs. RENAC. Positive values indicate a higher rate as
per the ECLAMC system, negative values indicate a higher rate as per the RENAC.
Z2: Z value obtained by comparing the frequencies observed byEUROCAT vs. RENAC. Positive values indicate a higher rate as
per the EUROCAT system, negative values indicate a higher rate as per the RENAC.
UN: unspecified.
492 / Arch Argent Pediatr 2013;111(6):484-494 / Original article
DISCUSSION
The observed prevalence (1.76% cases) is
within expected rates if only major morphological
CAs are considered. The most common CAs were
heart diseases, Down’s syndrome, oral clefts and
the set of neural tube defects (anencephaly, spina
bifida, encephalocele), consistent with ECLAMC
and EUROCAT reports, and with the literature.3
Of the specific CAs with significantly
different prevalences between the RENAC
and the ECLAMC, talipesequinovarus,
preaxialpolydactyly and postaxial polydactyly
had a lower prevalence in the RENAC; however,
such differences disappeared when analyzing the
total number of cases with talipesor polydactyly,
which included unspecified forms of these
anomalies. It is considered that these cases
were detected by the RENAC, but they were
not specifically described (for example, the
term “polydactyly” was described instead of
“postaxial polydactyly”, or “club foot” instead of
“talipesequinovarus”). In addition, the RENAC
recorded a higher rate of septal and valvular heart
defects, which could be attributed to the fact that
ECLAMC data correspond to a previous period
(2005-2007) than that of the RENAC (2009-2012),
probably with a lower availability of heart studies
and prior to the National Heart Disease Program,
which started in 2008.
In relation to the specific CAs which had
significantly different prevalences between the
RENAC and the EUROCAT, some differences
could be explained by the fact that the registries
of the consortium include a follow-up period of
newborn infants until they turn one year old. For
example, heart diseases and hip subluxation/
dislocation might not be evident at birth and,
therefore, it is assumed that the EUROCAT has a
better detection capacity. The higher prevalence of
hypospadias in the EUROCAT can be attributed
to a previously reported increasing trend.20
In relation to gastroschisis, it is known that
its rate is higher in the descendants of young
women;21 therefore, the lower prevalence found
by the EUROCAT can be attributed to differences
in the structure of maternal age.22 The higher
frequency of a cleft lip +/- palate observed by the
RENAC can be explained by the American Indian
component present in our population, previously
associated with this anomaly.23 The differences
observed in the prevalence of the remaining CAs
could be due to operational aspects or actual
differences.
There are no ideal systems or a single possible
organization for the surveillance of CAs. In some
countries, surveillance is conducted passively,
through health statistics; in others, surveillance is
active and involves the staff in charge of searching
cases.24 The sensitivity of birth certificates, using
active surveillance registries as reference, showed
an under-recording that ranges between 30% and
60% in the United Kingdom,25,26 and between 50%
and nearly 90% in the United States.27,28 In Brazil,
under-recording was variable, depending on the
CAs considered and the methods used.29,30
The RENAC conducts a mixed surveillance,
with data collected by neonatologists, who
are part of the hospital’s personnel, but they
are also part of this special registry, which
is centrally coordinated. Given that 99.4% of
births in Argentina take place in health facilities,
and within framework of birth regionalization
process currently taking place in the country,31
the organization of a hospital-based registry
was the selected strategy. Priority was given
to the public subsector hospitals which are
considered a referral center in their health region
or which have more than 1000 births per year,
thus ensuring a high number of births, adequate
diagnostic resources (trained doctors, X-rays,
ultrasounds, etc.) and a sufficient number of cases
to implement systematic registration. Although
the RENAC has a high coverage in the public
sector, births taking place in social security
and private facilities are still not recorded;
therefore, there would be a bias resulting from
their systematic exclusion. It is expected that non
public and smaller maternity centers will start
being included.
This study offers a first baseline regarding
the prevalence of certain specific CAs. This is the
initial step of the first objective of the RENAC,
i.e., to monitor the prevalence of specific CAs,
detect geographic variations or temporary trend
changes, generate the hypothesis regarding
determining factors, and evaluate the impact
of population interventions. Additionally, in a
country like Argentina, where genetic services
have not been sufficiently developed,32 the
RENAC also proposes to contribute to the early
management of newborn infants with CAs. As a
consequence, the system does not only involve
the flow of data from hospitals to the coordination
department, it is also based on an continuous
exchange and the remote support of health teams.
Health surveillance is taken as the production of
the data-information-knowledge triad, and also
as the communication-action processes for its use
towards the reduction of inequalities.33
The system collects, processes and shares
RENAC: National Registry of Congenital Anomalies in Argentina / 493
information, and at the same time, acts as a
management support by training and motivating
health teams. This strategy seems fundamental,
both to favor medical care of affected newborn
infants and to reach a purely epidemiological
goal. But having a continuous surveillance system
with a high coverage and quality in place does not
seem possible without the strong commitment of
participants based on their conviction regarding
the system’s usefulness for local management.
Some of the RENAC’s strengths include its
high coverage in the public sector; its operational
simplicity, which could be expanded at a national
level; the guidelines established in an operational
manual with standard procedures; the use of an
open source field for describing CAs instead of
having a multiple choice list; a centralized coding
in the hands of geneticists, thus ensuring its
suitability and homogeneous criteria; and the use
in the clinical context for the initial management
of affected newborn infants.
In relation to the system’s weaknesses, we
could mention the fact that non-public facilities
have not yet been included; that CAs detected
upon the hospital discharge are not recorded;
that there is a possible prevalence over-estimation
of the CAs detected prenatally and referred to
hospitals with a higher level of care, i.e., those
which are part of the RENAC; and that risk
factors are not systematically recorded but only
through special research projects.
CONCLUSIONS
Since it started operating, the RENAC has
expanded and reached a high coverage of the
public sector thanks to the support provided
by the authorities and the commitment of the
participating health teams. Differences observed
in the prevalence of CAs between the RENAC and
other registries could be attributed to operational
aspects or actual differences, depending on the
case.
In addition to the objective of producing
information relevant to the surveillance and
epidemiological research of congenital anomalies,
the RENAC works through the continuous
exchange among its participants, which allows to
comply with another objective of the registry: to
provide support to health teams in relation to the
initial management of affected newborn infants.
The RENAC deals with the collection, analysis
and dissemination of information regarding CAs
in Argentina, and also collaborates with local
interventions in the different prevention levels of
these anomalies.n
REFERENCES
1. World Health Organization. Control of Hereditary diseases.
World Health Organ Tech Rep Ser 1996;865:1-84.
2. Stevenson RE, HallJ Hand Goodman RM. Human
malformation and related Anomalies. Oxford Monographs
on Medical Geneticsn 27. New York: Oxford University
Press; 1993.
3. Christianson A, Howson CP, Modell B. Global reporton birth
defects. The hidden toll of dyin gand disabled children.
New York: march of dimes birth defects foundation, White
Plains; 2006.
4. Dirección de Estadísticas e Información de Salud (DEIS),
Estadísticas Vitales, Información Básica Año 2010. DEIS:
Programa Nacional de Estadísticas de Salud 2011. [Consulta:
February 22, 2013]. Disponible en: www.deis.gov.ar
5. Czeizel AE, Intôdy Z, Model lB. What proportion
of congenital abnormalities can b eprevented? BMJ
1993;306(6876):499-503.
6. De Sarasqueta P. Mortalidad infantil por malformaciones
congénitas y prematurez en la Argentina: análisis
de los criterios de reducibilidad. Arch Argent Pediatr
2006;104(2):153-158/153.
7. Mortalidad Infantil según criterios de reducibilidad.
Sistema Estadístico de Salud. Taller de Expertos, 22 y 23
de septiembre 2011. Serie 3, Número 56. Tercera Revisión,
Edición 2012.
8. Castilla EE, López-Camelo JS, Paz JE, Orioli IM. Prevención
Primaria de los Defectos Congénitos. Río de Janeiro: Editora
Fiocruz; 1995.
9. López-Camelo JS, Castilla EE, Orioli IM; INAGEMP
(Instituto Nacional de Genética Médica Populacional);
ECLAMC (Estudio Colaborativo Latino Americano de
Malformaciones Congénitas). Folicacid our fortication:
impact on the frequencies of 52 congenital anomalytypes
in three SouthAmerican countries. Am J Med Genet A
2010;152A(10):2444-58.
10. LenzW. A short history of thalidomide embryopathy.
Teratology 1988;38(3):203-15.
11. Botto LD, Robert-Gnansia E, Siffel C, Harris J, et al. Fostering
International collaboration in birth defects research and
prevention: a perspective from the International Clearing
house for Birth Defects Surveillance and Research. Am J
Public Health 2006;96(5):774-80.
12. Correa A, Kirby RS. An Expanded Public Health Role
forBirth Defects Surveillance. Birth Defects Research
(PartA): Clinical and Molecular Teratology 2012;88:1004-7.
13. Farel AM, Meyer RE, Hicken M, Edmonds LD. Registry to
referral: using birth defects registries to refer infants and
toddlers for early intervention services. Birth Defects Res
A ClinMol Teratol 2003;67(9):647-50.
14. Fescina RH, DeMucio B, Martínez G, Díaz Rossello JL,
et al. Sistema informático perinatal (SIP): historia clínica
perinatal: instrucciones del lenado y definición detérminos.
Montevideo: CLAP/SMR; 2010. (CLAP/SMR. Publicación
científica: 1572) [Accessed on: February 22, 2013].
Disponible en:http://www.clap.ops-oms.org/web_2005/
BOLETINES%20Y%20NOVEDADES/EDICIONES%20
DEL%20CLAP/CLAP%201572.pdf.
15. Castilla EE, Orioli IM. ECLAMC. The Latin-American
Collaborative Study of Congenital Malformations.
Community Genetics 2004;7:76:94.
16. Liascovich R, Gili JA, Valdez R, Somaruga L, et al. Desarrollo
de un registro nacional de anomalías congénitas: estudio
piloto de factibilidad. Rev Argent Salud Públ 2011;2(6):6-11.
17. Crawshaw Paul.The new BPA classification. Arch Dis Childh
1995;73:563-7.
18. EUROCAT. [Accessed on: January 4, 2013].Data obtained
from: http://www.eurocat-network.eu/
19. German RR, Lee LM, Horan JM, Milstein RL, et al.
494 / Arch Argent Pediatr 2013;111(6):484-494 / Original article
Guidelines Working Group Centers for Disease Control
and Prevention (CDC). Updated guidelines for evaluating
public health surveillance systems: recommendations
from the Guidelines Working Group. MMWR Recomm Rep
2001;50:1-35; quiz CE1-7.
20. Loane M, Dolk H, Kelly A, Teljeur C, Greenlees R, Densem J
;EUROCAT Working Group. Paper 4: EUROCAT statistical
monitoring: identification and investigation of ten year
trends of congenital anomalies in Europe. Birth Defects
Res A Clin Mol Teratol 2011;91(Suppl 1):S31-43.
21. Rittler M, Castilla EE, Chambers C, López-Camelo JS.
Risk for gastroschisis in primigravidity, length of sexual
cohabitation, and change in paternity. Birth Defects Res A
Clin Mol Teratol 2007;79(6):483-7.
22. United Nations Statistics Division- Demographic and
Social Statistics. Live births by age of mother and sex of
child, generaland age-specific fertility rates: latest available
year, 2000–2009. [Accessed on: March 25, 2013].Disponible
en:http://unstats.un.org/unsd/demographic/products/
dyb/dyb2009-2010/Table10.pdf
23. Robert E, Kallen B,Harris J.The epidemiology of orofacial
clefts. 1. Some general epidemiological characteristics. J
Craniofac Genet Dev Biol 1996;16:234-41.
24. Luquetti DV, Koifman RJ. Surveillance of birth defects:
Braziland the US. Cien Saú de Colet 2011;16(Suppl1):777-85.
25. Knox E, Armstrong E, Lancashire R.The quality of notifica-
tion of congenital malformations. J Epidemiol Comm Health
1984;38:296-305.
26. Boyd PA, Armstrong A, Dolk H, Botting B, et al. Birth
defects surveillance in England: ascertainment deficiencies
in the national system. BMJ 2005;330:27.
27. Watkins ML, Edmonds L, McClearn A, Mullins L,et al.
The surveillance of birth defects: the use fulness of the
revised US standard birth certificate. Am J Public Health
1996;86:731-734.
28. Cronk CE, Malloy ME, Pelech AN, Miller RE, et al.
Completeness of state administrative data bases for
surveillance of congenital heart disease. Birth Defects Res
A Clin Mol Teratol 2003;67:597-603.
29. Luquetti DV, Koifman RJ. Quality of reporting on birth
defects in birth certificates: case study from a Brazilian
reference hospital. Cad Saú de Pública 2009;1721:1731.
30. Guerra FAR, Llerena Jr. JC, Gama SGN, Cunha CB, Theme
Filha MM. Confiabilidaded as informações das declarações
de nascido vivo com registro de defeitos congênitos no
Município do Rio de Janeiro, Brasil, 2004. Cad Saú de Pública
2008;24:438-46.
31. Speranza AM, Kurlat I. Regionalización del cuidado
perinatal: una estrategia para disminuir la mortalidad
infantil y la mortalidad materna. Rev Argent Salud Pública
2001; 2(Nº 7):40-42.
32. Liascovich R, Rozental S, Barbero P, Alba L, Ortiz Z. Censo
de servicios de genética médica en Argentina. Rev Panam
Salud Publica 2006;19(2):104-11.
33. Alazraqui M ,Mota E, Spinelli H. Sistemas de Información
en Salud: de sistemas cerrados a la ciudadanía social. Un
desafío en la reducción de desigualdades en la gestión
local. Cad Saú de Publica 2006;22(12):2693-702.
RENAC: National Registry of Congenital Anomalies in Argentina / 495
ANEXO SOLO EN PÁGINAS ELECTRÓNICAS
Acknowledgments
Members of the RENAC’s Task Force working at the 98 hospitals included in the system up to June
30th, 2012.
Hospital Paroissien, La Matanza, Province of Buenos Aires
Andrea Puss Barraza
Magdalena Bisbal
Hospital Presidente Perón, Avellaneda, Province of Buenos Aires
Mariana Brautigam
Carla Zicavo
Hospital Nacional Alejandro Posadas, Haedo, Province of Buenos Aires
Isabel Micelli
Alicia Aranaz
Verónica Pingray
MaríaElena Borda
Hospital Evita, Lanús Oeste, Province of Buenos Aires
Mirta Noemí Raggio
Silvina Espósito
Verónica Mohando
Romina Flores
Hospital Narciso López, Lanús Este, Province of Buenos Aires
Mónica Jewtuszyk
Viviana Pagani
Hospital Magdalena Martínez, Pacheco, Province of Buenos Aires
Stella Maris Benitez
Hospital San Martín, La Plata, Province of Buenos Aires
Graciela Ramos
Marcos Miró
Dominique Mastropaolo
Hospital San Roque, La Plata, Province of Buenos Aires
NoemíOrellano
Ana Ceccon
MaríaRosa Toncich
Hospital Gandulfo, Lomas de Zamora, Province of Buenos Aires
Juan Carlos Delucca
Laura Botti
Viviana Cosentino
Hospital Mi Pueblo, Florencio Varela, Province of Buenos Aires
Cecilia Iraira
MaríaJosé Wernisch
Hospital Oñativia, Rafael Calzada, Province of Buenos Aires
Marcela Valenzuela
MaríaAntonia Afur
Hospital Meléndez, Adrogué, Province of Buenos Aires
Eva Cilia
Ana Barsellini
Ana Carolina Rocco
Hospital Ana Goitía, Avellaneda, Province of Buenos Aires,
Adriana Mosquera,
Valeria Vera
ANEX
496 / Arch Argent Pediatr 2013;111(6):484-494 / Original article
Hospital Evita Pueblo, Berazategui, Province of Buenos Aires
Mercedes Córdoba
Fabián Tomasoni
Hospital Iriarte, Quilmes, Province of Buenos Aires
Graciela Carballido
Silvia Ferroni
Hospital Oller, San Francisco Solano, Province of Buenos Aires
Melvin Barrantes
Hospital Eurnekian, Ezeiza, Province of Buenos Aires
Sandra Vanesa Romero Domínguez
Marcela Martínez
José Vega Chancafe
Hospital Alende, Lomas de Zamora, Province of Buenos Aires
Adrián Toffe
Hospital Fiorito,Avellaneda, Province of Buenos Aires
Felicitas Fumiere
Hospital Santamarina, Esteban Echeverría, Province of Buenos Aires
Marta Deckert
Margarita Gellini
Hospital Equiza, González Catán, Province of Buenos Aires
Rubén Goncalvez
Rodolfo Zaiat
Hospital Virgen del Carmen, Zárate, Province of Buenos Aires
Carlos Bachiochi
Horacio Cali
Hospital Bocalandro, Tres de Febrero, Province of Buenos Aires
Mariana Oreglia
David Fernández
Hospital San Felipe, San Nicolás, Province of Buenos Aires
Viviana Rodríguez
Graciela Olloco
Hospital Penna, Bahía Blanca, Province of Buenos Aires
María Fernanda Maurín
Sonia Scardapane
Hospital P.V. Cordero, San Fernando, Province of Buenos Aires
Marcelo Prieto
María Marta Sánchez Vera
Hospital Tettamanti, Mar del Plata, Province of Buenos Aires
Eduardo Gil
Jorge Raverta
Hospital Eva Perón, San Martín, Province of Buenos Aires
Maricel Pontorno
Andrea Becerra
Hospital Larcade, San Miguel, Province of Buenos Aires
Beatriz Velázquez
Fabiana Olivera
Hospital Santa Rosa, Vicente López, Province of Buenos Aires
Carina Tula
Patricia Moreno
RENAC: National Registry of Congenital Anomalies in Argentina / 497
Hospital Lavignolle, Morón, Province of Buenos Aires
Teresa Gentile
Verónica Figueredo
Hospital Mariano y Luciano de La Vega, Moreno, Province of Buenos Aires
Adriana Dagostino
Sabrina Chattah
Hospital Mercante, José C. Paz, Province of Buenos Aires
Gabriela Klinge
Julieta Sada
Lorena Bentivegna
Hospital Meissner, Pilar, Province of Buenos Aires
Stella Maris Benitez
Natalia González
Hospital Vicente López y Planes, Gral. Rodríguez, Province of Buenos Aires
Beatriz Rugelman
Graciela López
Elisa del Carmen Romero
Hospital Menem, Malvinas Argentinas, Province of Buenos Aires
Javier Nazr
Gladys Moreno
Hospital Carlos Gianantonio, San Isidro, Province of Buenos Aires
Blanca Cristina Senra
Inés González Bienes
MaríaLaura Sznitowsky
Hospital Erill, Escobar, Province of Buenos Aires
Horacio Cali
Hospital Alvarez, Autonomous City of Buenos Aires
M. Luisa Celadilla
Adriana Israilev
Hospital Argerich, Autonomous City of Buenos Aires
Ana Tocci
Karenith Santome
Hospital Durand, Autonomous City of Buenos Aires
Julio Falk
Noemí Nakayama
Hospital Fernández, Autonomous City of Buenos Aires
Ernesto Goldschmidt
Paula Molina
Hospital Penna, Autonomous City of Buenos Aires
Elena Cristiano
Hospital Piñero, Autonomous City of Buenos Aires
Mariana Panzitta
Gabriela Hernández
Claudia Epelbaun
Hospital Pirovano, Autonomous City of Buenos Aires
Alberto Capriata
Graciela Rodríguez
Hospital Ramos Mejía, Autonomous City of Buenos Aires
Rubén Bronberg
498 / Arch Argent Pediatr 2013;111(6):484-494 / Original article
Hospital Rivadavia, Autonomous City of Buenos Aires
Luis Somaruga
Alcira Oliva
Hospital Santojani, Autonomous City of Buenos Aires
Daniela Rottenberg
Valeria Castellano
Hospital Sardá, Autonomous City of Buenos Aires
Graciela Fernández
M. Carmen Arbones
Mónica Rittler
Hospital Vélez Sársfield, Autonomous City of Buenos Aires
Ramón Rodríguez
Mario Mardyks
Hospital San Juan Bautista, S.F. del Valle de Catamarca, Province of Catamarca
Inés Camacho
Marcos Toledo
Hospital Maternidad Kowalk, Río Cuarto, Province of Córdoba
Diana Portela
Paola Pía Allende
Hospital Río Cuarto, Río Cuarto, Province of Córdoba
María Laura Bonora
Nydia Berguío
Hospital Maternidad Nacional, Córdoba, Province of Córdoba
Yanina Dalsasso
Marcela del Valle Ogas
Hospital Maternidad Provincial, Córdoba, Province of Córdoba
Cynthia Sánchez Topic
Susana del Valle Ramaciotti
Hospital Materno Neonatal, Córdoba, Province of Córdoba
Raquel LucíaTorres
Marcela Beatriz Quaglia
Hospital Misericordia, Córdoba, Province of Córdoba
Andrea Paola Chirino Misissian
Débora Gurevich
Hospital José Vidal, Corrientes, Province of Corrientes
Maríadel Rosario Córdoba
Elsa Aguirre
Hospital Julio Perrando, Resistencia, Province of Chaco
Dina Juárez de Ribles
Andrea Lew
Hospital Regional de Comodoro Rivadavia, Comodoro Rivadavia, Province of Chubut
Maximiliano Medina Alarcón
Maríade los Angeles de Aro
Hospital Zonal Trelew, Trelew, Province of Chubut
Raúl Musante
Hospital Centenario, Gualeguaychú, Province of Entre Ríos
Margarita Otaegui
Carolina Corvalán
Noelia Romero
RENAC: National Registry of Congenital Anomalies in Argentina / 499
Hospital Rivadavia, Autonomous City of Buenos Aires
Luis Somaruga
Alcira Oliva
Hospital Santojani, Autonomous City of Buenos Aires
Daniela Rottenberg
Valeria Castellano
Hospital Sardá, Autonomous City of Buenos Aires
Graciela Fernández
M. Carmen Arbones
Mónica Rittler
Hospital Vélez Sársfield, Autonomous City of Buenos Aires
Ramón Rodríguez
Mario Mardyks
Hospital San Juan Bautista, S.F. del Valle de Catamarca, Province of Catamarca
Inés Camacho
Marcos Toledo
Hospital Maternidad Kowalk, Río Cuarto, Province of Córdoba
Diana Portela
Paola Pía Allende
Hospital Río Cuarto, Río Cuarto, Province of Córdoba
María Laura Bonora
Nydia Berguío
Hospital Maternidad Nacional, Córdoba, Province of Córdoba
Yanina Dalsasso
Marcela del Valle Ogas
Hospital Maternidad Provincial, Córdoba, Province of Córdoba
Cynthia Sánchez Topic
Susana del Valle Ramaciotti
Hospital Materno Neonatal, Córdoba, Province of Córdoba
Raquel LucíaTorres
Marcela Beatriz Quaglia
Hospital Misericordia, Córdoba, Province of Córdoba
Andrea Paola Chirino Misissian
Débora Gurevich
Hospital José Vidal, Corrientes, Province of Corrientes
Maríadel Rosario Córdoba
Elsa Aguirre
Hospital Julio Perrando, Resistencia, Province of Chaco
Dina Juárez de Ribles
Andrea Lew
Hospital Regional de Comodoro Rivadavia, Comodoro Rivadavia, Province of Chubut
Maximiliano Medina Alarcón
Maríade los Angeles de Aro
Hospital Zonal Trelew, Trelew, Province of Chubut
Raúl Musante
Hospital Centenario, Gualeguaychú, Province of Entre Ríos
Margarita Otaegui
Carolina Corvalán
Noelia Romero
Hospital Delicia Masvernat, Concordia, Province of Entre Ríos
Eugenia Fernanda Gauto
María Cecilia Arizabalo
Hospital San Roque, Paraná, Province of Entre Ríos
Mariel Bordenave
Mónica Ilardo
Hospital Urquiza, Concepción del Uruguay, Province of Entre Ríos
Adriana Gasparini
Adriana Reinoso
Hospital Madre y Niño, Formosa, Province of Formosa
Carina González
Felino Ruiz Díaz
Marilena Antinori
Hospital Pablo Soria, San Salvador de Jujuy, Province of Jujuy
Julia Flores
Claudia Carlos
Sonia Alavar
Hospital Gobernador Centeno, General Pico, Province of La Pampa
Alejandro Irrazábal
Hospital Lucio Molas, Santa Rosa, Province of La Pampa
Natalia Fatala
Susana Frutos
Silvina Re
Hospital de la Madre y el Niño de La Rioja (ex Vera Barros), La Rioja, Province of La Rioja
Soledad Carrizo del Moral
Susana Beatriz Garello
Hospital Lagomaggiore, Mendoza, Province of Mendoza
Cristina de Gaetano
Gabriela Torres
Hospital Paroissien, Mendoza, Province of Mendoza
Claudia Beatriz Pizarro
Gabriela Torres
Liliana Soler
Hospital Ramón Madariaga, Posadas, Province of Misiones
Maris Carlucci
Mónica Beatriz Dedieu
Mónica Kostecki
Hospital Castro Rendón, Neuquén, Province of Neuquén
Silvia Ávila
Eugenia Ponce Zaldúa
Luciana Fernández de Bon
Hospital Heller, Neuquén, Province of Neuquén
César Romero
Luciana Fernández de Bon
Hospital Francisco López Lima, General Roca, Province of Río Negro
Daniela Leimbgruber
Gladys Gutiérrez
Hospital Ramón Carrillo, Bariloche, Province of Río Negro
María Fabiana Tenreyro
500 / Arch Argent Pediatr 2013;111(6):484-494 / Original article
Hospital Público Materno Infantil, Salta, Province of Salta
Mariela Vilte
MaríaDolores Ruiz
Hospital San Vicente Paul, Orán, Province of Salta
Analía Inojosa
Alexandra Villareal
Franz Ancalle
Hospital Rawson, San Juan, Province of San Juan
Alejandra Sanz
Mirta Armesto
Silvia Mateos de Sarich
Hospital Complejo Sanitario San Luis, San Luis, Province of San Luis
Laura Espinosa
Mónica Menzio
Hospital Regional de Río Gallegos, Río Gallegos, Province of Santa Cruz
Alicia Susana Guanuco
Estela Cruz
Hospital Maternidad Martin, Rosario, Province of Santa Fe
Fabiola Contreras
Hilda Beatriz Fernández
Silvia Carbognani
Hospital Alejandro Gutiérrez, Venado Tuerto, Province of Santa Fe
Leonardo Andrés Fedre
Laura Mariño
Hospital Del Centenario, Rosario, Province of Santa Fe
Verónica Inés Cicao
Alejandro Rossi
Hospital Eva Perón, Rosario, Province of Santa Fe
Fernando Basualdo
Natalia Vázquez Parachú
Hospital Iturraspe, Santa Fe,Province of Santa Fe
Norma Domínguez
MaríaLaura Charvey
Hospital Jaime Ferré, Rafaela, Province of Santa Fe
Miriam Martínez
Claudia Villagran
Hospital O. Stuki de Rizzi, Reconquista, Province of Santa Fe
Dalila Soledad Agretti
Ana MaríaAlegre
Hospital Provincial de Rosario, Rosario, Province of Santa Fe
Verónica Willimburgh
Hospital Roque Sáenz Peña, Rosario, Province of Santa Fe
Gladis Terre
Griselda Arrastia
Hospital J. M. Cullen, Santa Fe,Province of Santa Fe
Laura Peralta
Hospital Ramón Carrillo, Santiago del Estero, Province of Santiago del Estero
Lidia Esther Padilla de Alvarez
Claudia Jugo
RENAC: National Registry of Congenital Anomalies in Argentina / 501
Hospital de Río Grande, Río Grande, Province of Tierra del Fuego
Eduardo Zunino
Alejandra Albanesi
Hospital Ushuaia, Ushuaia, Province of Tierra del Fuego
Sergio Nicolussi
Daniel Caffarone
Hospital Nuestra Señora de las Mercedes, S. M. de Tucumán, Province of Tucumán
César Saleme
Gabriela Díaz
Hospital Belascuain, Concepción, Province of Tucumán
Lorena González Arias
Hospital Nicolás Avellaneda, S. M. de Tucumán, Province of Tucumán
Claudia Montenegro
Graciela Gutiérrez
Verónica Otero
We would also like to thank the following physicians for their help: Jaime Lazovski, Guillermo
González Prieto, Silvia Báez Rocha, Liliana Alba, Ana Speranza, Lucrecia Manfredi, Carlos Guevelad,
Élida Marconi, who work at the National Ministry of Health. In addition, we would like to thank the
following physicians for their continuous guidance: Jorge López Camelo, Mónica Rittler and Eduardo
Castilla, from the ECLAMC, a ground-breaking registry in the region and worldwide.