News and Highlights
Latin American and Caribbean Genomics Research Consortium Marks Innovative CollaborationApril 4, 2012
An international team of clinicians, geneticists, social scientists, and community leaders led by the University of Miami’s John P. Hussman Institute for Human Genomics (HIHG) and the Center for Latin American Studies (CLAS) officially launched the Latin American and Caribbean Neural Tube Defects (NTD) Consortium in Buenos Aires, Argentina on March 10, 2012. The Consortium’s mission is to unite professionals and civic society organizations to conduct research, educate, and exchange information to identify the genetic and environmental causes of Neural Tube Defects in Latin America and the Caribbean. NTDs are the second most common birth defects in the world, with some of the highest rates found in Latin America. The Consortium represents a unified front in Latin America and a major undertaking by the University of Miami to encourage research in this part of the world with additional goals aimed at increasing collaborative activities between NTD advocacy groups and health research organizations while expanding knowledge of the complete genetic structure underlying NTD; information which is relevant across all human populations.
While in Argentina, the UM delegation was invited to speak at the Día Internacional de la Mujer (International Women’s Day) event, held in the Argentine Foreign Ministry building, hosted by the Asociación Para Espina Bífida e Hidrocefalia (APEBI), Argentina’s largest Spina Bifida association. The UM group also moderated the first inaugural meeting of the NTD Consortium with other key members representing various hospitals and community organizations throughout Latin America. This Consortium is unique and important because it is the first to combine researchers and organizations like APEBI working together towards a common goal; finding the causes of Spina Bifida.
The participants analyzed methods to improve culturally sensible approaches to the study and practice of genetic research, the possibility of creating a nation-wide network in Argentina, Chile, and other Latin American countries for the early detection and treatment of NTDs, and the inclusion of civil society organizations such as APEBI, which has been promoting advocacy efforts to prevent neurological pathologies since 1975 and connects the Consortium directly to ongoing efforts to prevent genetic disorders.
In what marked the beginning of promising governmental collaborative efforts Dr. Ariel Armony (Director of CLAS and Member of the Consortium) and Dr. Evadnie Rampersaud (Principal Investigator of the Miami NTD study and Inaugural President of the Consortium) met with Argentine government officials and university leaders during their visit. Meetings were held with Dr. Lino Barañao, Argentina’s Minister of Science, Technology and Productive Innovation, Dr. Daniel Yedlin, Chief of Staff to the Argentine Minister of Health, and Dr. Hugo Sirkin, Secretary of Science and Technology at the University of Buenos Aires. These high-level meetings also included the presence of the Consul of Argentina in Miami, Ambassador Miguel Talento, the president of (APEBI) Elena Monzón de Záppoli, and a representative from the National Center for Genetic Research in Argentina, Dr. Liliana Dain.
The NTD Consortium looks forward to meeting again in Miami Florida in May 2012, and to the 2014 World Congress on Neural Tube Defects, which will be held in Buenos Aires, Argentina.
Founding members of the Latin American and Caribbean Neural Tube Defects (NTD) Consortium at the Argentine Foreign Ministry building (Palacio San Martín).
From left to right: Ambassador Miguel Talento (Argentina's Consulate in Miami); Elena Monzón de Záppoli, President, Association for Spina Bifida and Hydrocephalus (APEBI, Asociación para Espina Bífida e Hidrocefalia); Dr. Evadnie Rampersaud, Assistant Professor, UM's Hussman Institute for Human Genomics; Dr. Lino Barañao, Argentina's Minister of Science, Technology and Productive Innovation; Dr. Ariel Armony, Director, UM's Center for Latin American Studies; Dr. Liliana Dain, Researcher, Argentina's National Center for Medical Genetics.