A consensus statement on birth defects surveillance, prevention, and care in Latin America and the Caribbean

Author:

Zarante Ignacio1,Hurtado-Villa Paula2,Walani Salimah R.34,Kancherla Vijaya5,López Camelo Jorge6,Giugliani Roberto7,Groisman Boris8,Howson Christopher P.9,Durán Pablo10

Affiliation:

1. Human Genetics Institute, School of Medicine, Pontificia Universidad Javeriana, Bogotá, Colombia

2. Basic Health Sciences Department, Faculty of Health Sciences, Pontificia Universidad Javeriana, Cali, Colombia

3. March of Dimes, Arlington, Virginia, United States of America

4. swalani@marchofdimes.org

5. Center for Spina Bifida Prevention, Department of Epidemiology, Rollins School of Public Health, Emory University, Atlanta, Georgia, United States of America

6. Latin American Collaborative Study of Congenital Malformations (ECLAMC), Center for Medical Education and Clinical Research (CEMIC-CONICET), Buenos Aires, Argentina

7. Department of Genetics, Federal University of Rio Grande do Sul, Medical Genetics Service, Hospital de Clinicas de Porto Alegre, Porto Alegre, Brazil

8. National Network of Congenital Anomalies of Argentina, National Center of Medical Genetics, National Administration of Laboratories and Health Institutes, Buenos Aires, Argentina

9. Howson & Partners for Global Health, Santa Fe, New Mexico, United States of America

10. Latin American Center for Perinatology, Women’s and Reproductive Health, Pan American Health Organization/World Health Organization, Montevideo, Uruguay

Abstract

Birth defects contribute up to 21% of the mortality in those under 5 years of age in Latin America and the Caribbean (LAC), and that burden has been compounded by the Zika virus epidemic. In 2001, the March of Dimes launched a series of biennial assemblies called the International Conference on Birth Defects and Disabilities in the Developing World (ICBD). The latest ICBD, in 2017, convened in Bogotá, Colombia, and was attended by over 300 professionals, policymakers, and donors. The conference attendees, a majority of whom were from LAC, supported a call to action in the form of a consensus statement. The consensus statement lists key actions for maximizing birth defects surveillance, prevention, and care in LAC: 1) improving surveillance; 2) reducing risks for birth defects; 3) fortifying staple foods; 4) preventing and treating infections associated with birth defects; 5) implementing newborn screening; 6) providing care and services for people with birth defects and disabilities; 7) involving governments, civil society, and international agencies; and 8) advancing research for birth defects. Implementation and scale-up of evidence-based interventions using multisectoral and multidisciplinary collaborative approaches were endorsed. LAC countries can leverage technology and social media to advance and advocate for approaches identified in the consensus statement. The consensus statement can be used as a guide by both governments and nongovernmental agencies to take immediate steps for improving the quality of life of those living with birth defects and associated disabilities in the LAC countries.

Publisher

Pan American Health Organization

Subject

Public Health, Environmental and Occupational Health

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