International Clearinghouse for Birth Defects
Surveillance and Research.
International Clearinghouse for Birth Defects
Surveillance and Research.
Home
Surveillance Programs
ICBDSR
Contacts
Program details
Generla info
Name :
Short name:
Country:
History:
The Programme started in November 2009 in 4 provinces of Argentina as a hospital-based surveillance system. Since then it has grown in size and coverage, including 180 hospitas from the 24 provinces of the country. It was created with two main objectives: the classical one of generating epidemiological knowledge about distribution and determinants of birth defects, but also with the objective of improving care of affected newborns.
Size and coverage::
The number of participating hospitals has grown from 4 in 2009 to 180 at the present time. RENAC covers 300,000 annual births, approximately 70% of births in the public sector and 40% of births of the whole country.
Legislation and funding:
The Program is funded by the National Center of Medical Genetics (CNGM), under the National Ministry of Health. Information is disseminated to the stakeholders, including the participating neonatologists who feel empowered when using locally their own processed data. The dissemination is performed through a printed annual report, an annual meeting funded by the NMoH (attended by neonatologists, members of other health programs, clinical geneticists and authorities); and the electronic sending of reports to the stakeholders.
Sources of ascertainment:
Reporting is made by collaborating neonatologists at the maternity hospitals. The detection period lasts until discharge from the hospital, including live birth and stillbirths (with more than 500 grams) with major morphological birth defects. The neonatologists describe birth defects in an open field with a verbatim description. Each month, they send data to the Coordination through a restricted access website (a fórum platform) that allows data sending, resolution of operational issues and discussion of clinical cases. Forum interaction allows social cohesion among all participants who feel themselves as members of the same team. To achieve a high and homogeneous coding quality, coding is performed by medical geneticists of the Coordination. To allow comparisons with other sources we use the ICD-10 with the RCPCH modification
Exposure information:
No exposure information
Background information:
Addresses and staff:
Rosa Liascovich,Programme Director,E-mail: rosaliascovich@hotmail.com,,Pablo Barbero,Associate Director,Phone 5411-4853-3063,E-mail: pablobarbero63@gmail.com,,Boris Groisman,Associate Director,Phone 54911-41716690,E-mail: bgroisman@gmail.com,,Address: Las Heras 2670 3rd floor, City of Buenos Aires, ZIP: 1425
Phone:
Fax:
E-mail:
Publications
L
Liascovich, R. C., E. E. Castilla, M. Rittler. Consanguinity in Southamerica. Demographic aspects. Human Heredity 2001; 51:27-34.
https://www.ncbi.nlm.nih.gov/pubmed/11096268
Rittler M., R. Liascovich, J. Lopez-Camelo, E.E. Castilla. Parental consanguinity in specific types of congenital anomalies, American Journal of Medical Genetics 2001; 102: 36 – 43.
https://www.ncbi.nlm.nih.gov/pubmed/11471170
Barbero P, Liascovich R, Rozental S, Botto R, Gramajo S y Haefliger C. Conocimientos de tocoginecólogos y pediatras acerca de la etiología y los factores de riesgo de los defectos congénitos. Argent. Pediatr 2003; 101: 184-192.
http://www.sap.org.ar/docs/publicaciones/archivosarg/2003/184.pdf
Barbero P, Ricagni C, Mercado G, Bronberg R,Torrado M. Choanal atresia Associated with Prenatal Methimazole Exposure: Three New Patients. Am J Med Genet. 2004 Aug15;129 A(1):83-6 DOI: 10.1002/ajmg.a.20668
https://www.ncbi.nlm.nih.gov/pubmed/15266622
Barbero P, Lotersztein V, Bronberg R, Perez M, Alba L. Acitretin embryopathy: a case report. Birth Defects Res Part A Clin Mol Tertol 2004 Oct;70(10):813-3.
DOI: 10.1002/bdra.20078
https://www.ncbi.nlm.nih.gov/pubmed/15470719
Liascovich R, Rozental S, Barbero P, Alba L, Ortiz Z. Censo de servicios de genética médica en Argentina. Rev Panam Salud Pública 2006; 19(2):104-11.
http://www.scielosp.org/pdf/rpsp/v19n2/30304.pdf
Valdez RM, Barbero PM, Liascovich RC, De Rosa LF, Aguirre MA, Alba LG. Methimazole embryopathy: A contribution to defining the phenotype. Reprod Toxicol 2007; Feb;23(2):253-5.
https://www.ncbi.nlm.nih.gov/pubmed/17218082
Barbero P, Valdez R, Rodríguez H, Tiscornia C, Mansilla E, Allons A, Coll S, Liascovich R. Choanal atresia associated with maternal hyperthyroidism treated with methimazole: A case–control study. Am J Med Genet Part A 2008; 146A:2390–2395.
https://www.ncbi.nlm.nih.gov/pubmed/18698631
Pardon F, Vilarin F, Barbero P, Garcia G , Outon E, Gil C, Vera A, Rossi S, Distefano A Rubella Vaccination of Unknowingly Pregnant Women During 2006 Mass Campaign in Argentina 2011. J Infect Dis. 2011 Sep;204 Suppl 2:S745-7 DOI: 10.1093/infdis/jir442
https://www.ncbi.nlm.nih.gov/
pubmed/21954276
Liascovich R., Gili JA, Valdez R, Somaruga L, Goldshmidt E, Bronberg R, Ricagni C, Mussi M, Medina A, Deguer C; Menzio M, Guevel C, Fernández MM, Marconi E, López Camelo JS. Desarrollo de un registro nacional de anomalías congénitas: estudio piloto de factibilidad. Revista Argentina de Salud Pública 2011; 2(6):6-11.
http://www.rasp.msal.gov.ar/rasp/articulos/volumen6/registro-nacional.pdf
Barbero P, Liascovich R, Valdez R, Moresco A. Efecto teratogénico del misoprostol: un estudio prospectivo. Arch Argent Pediatr 2011;109(3):226-231
http://www.scielo.org.ar/pdf/aap/v109n3/v109n3a07.pdf
Groisman B, Liascovich R, Barbero P, Alberg C, Moorthie S, Nacul L, Sagoo GS..
The use of a Toolkit for health needs assessment on neural tube defects in Argentina.
J Community Genet 2012; Oct 4.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3537973/
Groisman B, Bidondo MP, Barbero P, Gili J, Liascovich Ry Grupo de Trabajo RENAC. Registro Nacional de Anomalías Congénitas de Argentina. Arch Argent Pediatr 2013; 111(6):484-494.
http://www.scielo.org.ar/pdf/aap/v111n6/v111n6a06.pdf
Groisman B, Bidondo MP, Gili J, Barbero P, Liascovich R. Strategies to Achieve Sustainability and Quality in Birth Defects Registries: The Experience of the National Registry of Congenital Anomalies of Argentina. Journal of Registry Management 2013; vol 40 (1): 29-31.
https://www.ncbi.nlm.nih.gov/pubmed/23778694
Martín MC; Cristiano E; Villanueva M, Bonora MC, Berguio N, Tocci A, Groisman B, Bidondo MP, Liascovich R, Barbero P. Esophageal atresia and prenatal exposure to mycophenolate. Reproductive Toxicology 2014; (50) 117–121.
https://www.ncbi.nlm.nih.gov/pubmed/25461910
Ercoli G, Bidondo MP, Senra BC, Groisman B. Apert syndrome with omphalocele: a case report. Birth Defects Res A Clin Mol Teratol. 2014 Sep;100(9):726-9. doi: 10.1002/bdra.23270. https://www.ncbi.nlm.nih.gov/pubmed/25045033
Bidondo MP, Groisman B, Gili J, Liascovich R., Barbero P y Grupo de Trabajo RENAC
.
Prevalencia de anomalías congénitas en Argentina y su potencial impacto en los servicios de salud. Rev Argent Salud Pública 2014; 5(21): 38-44.
http://www.rasp.msal.gov.ar/rasp/articulos/volumen21/38-44.pdf
Martín MC, Barbero P, Groisman B, Aguirre MÁ, Koren G. Methotrexate embryopathy after exposure to low weekly doses in early pregnancy. Reprod Toxicol. 2014 Jan;43:26-9. https://www.ncbi.nlm.nih.gov/pubmed/24513926
Bidondo MP, Groisman B, Barbero P, Liascovich R. Public health approach to birth defects: the Argentine experience. Journal of Community Genetics 2015; Volume 34 Number 2 January 15-22.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4356676/
Flores A, Valencia D, Sekkarie A, Hillard CL, Williams J, Groisman B, Botto LD, Peña-Rosas JP, Bauwens L, Mastroiacovo P. Building capacity for birth defects surveillance in Africa: Implementation of an intermediate birth defects surveillance workshop. J Glob Health Perspect. 2015;2015.
https://www.ncbi.nlm.nih.gov/pubmed/26753106
Bidondo MP, Liascovich R, Barbero P, Groisman B. Prevalence of neural tube defects and estimation of cases averted in the post-fortification period in Argentina. Arch Argent Pediatr. 2015 Dec 1;113(6):498-501
http://www.ncbi.nlm.nih.gov/pubmed/26294167
Bidondo MP, Groisman B, Gili JA, Liascovich R y Barbero P. Estudio de prevalencia y letalidad neonatal en pacientes con anomalías congénitas seleccionadas con datos del Registro Nacional de Anomalías Congénitas de Argentina. Arch Argent Pediatr 2015; Ago 113(4):295-302.
http://www.scielo.org.ar/pdf/aap/v113n4/v113n4a04.pdf
Sargiotto C, Bidondo MP, Liascovich R, Barbero P, and Groisman B. Descriptive Study on Neural Tube Defects in Argentina. Birth Defects Res A Clin Mol Teratol2015; Jun;103(6):509-16.
https://www.ncbi.nlm.nih.gov/pubmed/25855266
Bidondo MP, Liascovich R, Barbero P, Groisman B. Prevalencia de defectos del tubo neural y estimación de casos evitados posfortificación en Argentina. Arch Argent Pediatr 2015; 113(6):498-501.
ttp://www.scielo.org.ar/pdf/aap/v113n6/v113n6a08.pdf
López B, Polo C, Martín MC, Mercado G, Groisman B, Bidondo MP, Liascovich R, Barbero P. Secuencia Moebius. Análisis retrospectivo de 30 pacientes. Medicina Infantil 2015; Vol. XXII N° 2, 76-82.
http://www.medicinainfantil.org.ar/images/stories/volumen/2015/xxii_2_078.pdf
Ormazabal M, Vaccari N, Szulepa R, Bidondo MP, Barbero P, Groisman B. Acheiropodia: first case report in Argentina. Arch Argent Pediatr. 2015 Oct;113(5):e299-303. doi: 10.5546/aap.2015.e299.
https://www.sap.org.ar/docs/publicaciones/archivosarg/2015/v113n5a25.pdf
Groisman B; Gili J, Gimenez L, Poletta F, Bidondo MP, Barbero P, Liascovich R, López-Camelo J. Geographic clusters of congenital anomalies in Argentina. J Community Genet; 2017 Jan; 8(1): 1–7.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5222755/pdf/12687_2016_Article_276.pdf
Groisman B, Liascovich R, Gili J, Barbero P, Bidondo MP, and the RENAC Task Force. Sirenomelia in Argentina: prevalence, geographic clusters and temporal trends analysis. Birth Defects Research (Part A) 2016; 106:604-611.
http://onlinelibrary.wiley.com/doi/10.1002/bdra.23501/full
Groisman B, Bidondo MP, Barbero P, Liascovich R. La Red Nacional de Anomalías Congénitas (RENAC): objetivos ampliados de la vigilancia. Arch Argent Pediatr 2016; 114(4):295-297.
http://www.scielo.org.ar/pdf/aap/v114n4/v114n4a04.pdf
Groisman B, Bidondo MP, Liascovich R, Barbero P. Microcefalia en Argentina según datos de la Red Nacional de Anomalías Congénitas. Rev Argent Salud Pública 2016; Mar; 7(26):39-42.
http://www.rasp.msal.gov.ar/rasp/articulos/volumen26/39-42.pdf
Bidondo MP, Groisman B, Tardivo A, Tomasoni F, Tejeiro V, Camacho I, Vilas M, Liascovich R, Barbero P. Diprosopus: Systematic review and report of two cases. Birth Defects Res A Clin Mol Teratol. 2016 Oct 5. doi: 10.1002/bdra.23549.
http://onlinelibrary.wiley.com/doi/10.1002/bdra.23549/abstract
Cassinelli A, Pauselli N, Piola A, Martinelli C, Alves de Azevedo JL, Bidondo MP, Groisman Barbero P, Liascovich R, Sala A. Red nacional para la atención de niños/as con fisuras orales: organización, funcionamiento y primeros resultados. Arch Argent Pediatr 2018;116(1):e26-e33.
http://www.sap.org.ar/uploads/archivos/files_ao_cassinelli_17-1pdf_1514999429.pdf
Flores A, Turay K, Valencia D, Hillard CL, Sekkarie A, Zaganjor I, Williams J, Qui YP, Cordero AM, Mulinare J, Botto LD, Peña-Rosas JP, Groisman B, Mastroiacovo P. Development and Utility of a Birth Defects Surveillance Toolkit. Journal of Global Health Perspectives. 2018 Jun 14.
http://jglobalhealth.org/article/development-and-utility-of-a-birth-defects-surveillance-toolkit/
Tellechea AL, Luppo V, Morales MA, Groisman B, Baricalla A, Fabbri C, Sinchi A, Alonso A, Gonzalez C, Ledesma B, Masi P, Silva M, Israilev A, Rocha M, Quaglia M, Bidondo MP, Liascovich R, Barbero P; RENAC Task Force. Surveillance of microcephaly and selected brain anomalies in Argentina: Relationship with Zika virus and other congenital infections. Birth Defects Res. 2018 Jun 19. doi: 10.1002/bdr2.1347.
https://onlinelibrary.wiley.com/doi/abs/10.1002/bdr2.1347
Vishnopolska SA, Turjanski AG, Herrera Piñero M, Groisman B, Liascovich R, Chiesa A, Marti MA. Genetics and genomic medicine in Argentina.Mol Genet Genomic Med. 2018 Jul 26. doi: 10.1002/mgg3.455. https://onlinelibrary.wiley.com/doi/abs/10.1002/mgg3.455
Groisman B, Bidondo MP, Duarte S, Tardivo A, Barbero P, Liascovich R. Descriptive epidemiology of major structural congenital anomalies in Argentina. Medicina (B Aires). 2018;78(4):252-257.
Bermejo-Sánchez E, Botto LD, Feldkamp ML, Groisman B, Mastroiacovo P. Value of sharing and networking among birth defects surveillance programs: an ICBDSR perspective. J Community Genet. 2018 Oct;9(4):411-415. doi: 10.1007/s12687-018-0387-z.
Delea M, Espeche LD, Bruque CD, Bidondo MP, Massara LS, Oliveri J, Brun P, Cosentino VR, Martinoli C, Tolaba N, Picon C, Ponce Zaldua ME, Ávila S, Gutnisky V, Perez M, Furforo L, Buzzalino ND, Liascovich R, Groisman B, Rittler M, Rozental S, Barbero P, Dain L.Genetic Imbalances in Argentinean Patients with Congenital Conotruncal Heart Defects. Genes (Basel). 2018 Sep 11;9(9). pii: E454. doi: 10.3390/genes9090454.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6162499/
Groisman B, Liascovich R, Bidondo MP, Barbero P, Duarte S, Tellechea AL, Holguín J, Rodríguez C, Hurtado-Villa P, Caicedo N, Botta G, Zarante I. Birth defects surveillance: experiences in Argentina and Colombia. J Community Genet. 2019 Jan 3. doi: 10.1007/s12687-018-00403-6.
https://www.ncbi.nlm.nih.gov/pubmed/30607893
Duarte SP, Rocha ME, Bidondo MP, Liascovich R, Barbero P, Groisman B. Bone dysplasias in 1.6 million births in Argentina. Eur J Med Genet. 2018 Dec 17. pii: S1769-7212(18)30593-7. doi: 10.1016/j.ejmg.2018.12.008.
https://www.ncbi.nlm.nih.gov/pubmed/30572171
Bidondo MP, Groisman B, Gili JA, Liascovich R, Martin MC, Tocci A, Flores R, Pus Barraza A, Barbero P. Analysis on risk factors associated with birth defects in newborns in the area of the Matanza-Riachuelo river basin. Rev Fac Cien Med Univ Nac Cordoba. 2018 Dec 13;75(4):261-269. doi: 10.31053/1853.0605.v75.n4.20284
https://www.ncbi.nlm.nih.gov/pubmed/30734705
Loiacono K, Guevel CG, Groisman B. Análisis de la Mortalidad Infantil por Anomalías Congénitas en Argentina según Perfil Socioeconómico, 2007-2014 Rev Argent Salud Pública, 2018; 9(37): 29-36
http://rasp.msal.gov.ar/rasp/articulos/volumen37/29-36.pdf
Groisman B, Barbero P, Mastroiacovo P, Botto LD, Bidondo MP, Liascovich R. Application of quality indicators to data from the National Network of Congenital Anomalies of Argentina. Birth Defects Res. 2019 Feb 13. doi: 10.1002/bdr2.1472.
https://www.ncbi.nlm.nih.gov/pubmed/30756506
Groisman B, Mastroiacovo P, Barbero P, Bidondo MP, Liascovich R, Botto LD. A proposal for the systematic assessment of data quality indicators in birth defects surveillance. Birth Defects Res. 2019 Feb 11. doi: 10.1002/bdr2.1474.
https://www.ncbi.nlm.nih.gov/pubmed/30746866
Zarante I, Hurtado-Villa P, Walani SR, Kancherla V, López Camelo J, Giugliani R, Groisman B, et al. A consensus statement on birth
defects surveillance, prevention, and care in Latin America and the Caribbean. Rev Panam Salud Publica. 2019;43:e2.
https://doi.org/10.26633/RPSP.2019.2.
http://iris.paho.org/xmlui/bitstream/handle/123456789/50473/v43e22019.pdf
Durán P, Liascovich R, Barbero P, Bidondo MP, Groisman B, Serruya S, et al. Sistemas de vigilancia de anomalías congénitas en América Latina y el Caribe: presente y futuro. Rev Panam Salud Publica. 2019;43:e44.
https://doi.org/10.26633
/RPSP.2019.44
Groisman B, Bermejo-Sánchez E, Romitti PA, Botto LD, Feldkamp ML, Walani SR, Mastroiacovo P. Join World Birth Defects Day. Pediatr Res. 2019 Apr 9. doi: 10.1038/s41390-019-0392-x.