History and Funding
The National Registry of Congenital Anomalies of Argentina (RENAC) started in november 2009 in 4 provinces of Argentina as a hospital-based registry. Since then it has grown in size and coverage, reaching all 24 provinces of the country. The Program is funded by the National Center of Medical Genetics (CNGM) and the Program of Medical Genetics National Network, under the National Ministry of Health. Since 2013 RENAC is a member of the International Clearinghouse for Birth Defects Surveillance and Research (ICBDSR). RENAC has two objectives:
- To generate epidemiological data about distribution and determinants of BDs.
- To improve the care of affected newborns, since genetic services in Argentina are sparse and physicians are often unaware of how to manage birth defects.
The number of participating hospitals has grown from 4 in 2009 to 120 at the present time. Argentina has 700,000 annual births, 400,000 having place in the public sector. By 2013, RENAC covers 300,000 annual births, approximately 75% of births in the public sector and 40% of births of the whole country. The registry works by now in public maternity hospitals with more than 1,000 annual births per year. In the next years it will includes maternity hospitals from the non-public sector.
Sources of Ascertainment
Reporting is made by collaborating neonatologists at the maternity hospitals. The inclusion criteria was restricted to livebirths or stillbirths weighing 500 grams or more, with major morphological birth defects as defined by EUROCAT, identified from birth until discharge, and detected by physical examination or complementary studies.
The neonatologists describe birth defects in an open field with a verbatim description. For each case they report hospital name, prenatal diagnosis by ultrasound, date of birth, Live birth/Stillbirth, Twining (Yes/No), Status when sending data (not discharged, discharged alive, dead or referred to another hospital), sex (male/female/not determined), weight, gestational age, maternal age, number of previous pregnancies and address of residence of the mother.
Each month, they send data to the Coordination through a restricted access website (a forum platform) that allows data sending, resolution of operational issues and discussion of clinical cases. Coding is performed by medical geneticists of the Coordination. RENAC uses the ICD-10 with the British Pediatrics Association modification.
Maximum Age at Diagnosis
The detection period is from birth until discharge from the hospital. Follow up is performed in selected malformations in special research projects.
Terminations of Pregnancy for Fetal Anomaly (TOPFA)
RENAC doesn´t include ToP for Fetal anomaly, because it´s illegal in Argentina.
Stillbirth and Early Fetal Deaths
The definition of stillbirth is a baby born with no signs of life weighing 500g or more. RENAC doesn´t include early fetal deaths.
Exposure Data Availability
Exposure data is not routinely registered. However, we develop special research studies in selected RENAC hospitals with a case-control design. For these special projects we gather exposure information on parental occupation, education, housing conditions and exposures during pregnancy (maternal acute and chronic illness, fever, legal and illegal drugs, alcohol, smoking, x-ray exposure).
Denominators and Controls Information
Denominators are obtained monthly from participating hospitals. The RENAC routine doesn´t include controls information, but we include controls in special case-control studies in selected RENAC hospitals.
Registry Description References
Groisman B, Bidondo MP, Gili JA, Barbero P, Liascovich R. (2013). Strategies to achieve sustainability and quality in birth defects registries: the experience of the national registry of congenital anomalies of Argentina. J Registry Manag. 2013 Spring;40(1):29-31.
Groisman B, Bidondo MP, Barbero P, Gili JA, Liascovich R. (2013). RENAC: Registro Nacional de Anomalías Congénitas de Argentina. Arch Argent Pediatr (in press). Spanish.
Ethics & Consent
RENAC data is anonymous. The argentinian law states that "evaluation by a research ethics committee is not necessary on government health programs or public health surveillance, provided that there is no possibility to identify individuals in the study". Informed consent is asked to parents of affected cases before taking pictures.
Address for Further Information
Centro Nacional de Genética Médica (CNGM),
Las Heras 2670 3rd floor,
Ciudad Autónoma de Buenos Aires Zip code: 1425