RENAC 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 160 hospitals 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.
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.
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 forum 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