title: Strategies to achieve sustainability and quality in birth defects registries: the experience of the National Registry of Congenital Anomalies of Argentina.
abstract: In many low-and middle-income countries, birth defects are not considered a public health priority and are perceived by the medical community as rare, unpreventable events. In this context, a registry of birth defects should address not only the collection, analysis, and dissemination of information but also contribute to local interventions like prevention, diagnosis, and treatment. We describe the National Registry of Congenital Anomalies of Argentina (RENAC) in terms of case definition, data collection, quality assurance, and data sending, coding, analysis, and information dissemination and we present the strategies used to ensure its sustainability. We emphasize strategies for motivating the people collecting data, such as training activities, participation in research projects, returning the processed data, making useful clinical information available, giving non-monetary rewards, and linking cases to genetic services.
authors.forename: Boris
authors.initials: B
authors.lastname: Groisman
authors.forename: Maria Paz
authors.initials: MP
authors.lastname: Bidondo
authors.forename: Juan Antonio
authors.initials: JA
authors.lastname: Gili
authors.forename: Pablo
authors.initials: P
authors.lastname: Barbero
authors.forename: Rosa
authors.initials: R
authors.lastname: Liascovich
mesh_terms: D001118:Argentina / Q000453:epidemiology; D000013:Congenital Abnormalities / Q000453:epidemiology*; D003625:Data Collection / Q000379:methods; D003906:Developing Countries; D006801:Humans; D033181:Information Dissemination / Q000379:methods; D011786:Quality Control; D012042:Registries / Q000706:statistics & numerical data*