Coordinator: Prof. Dr. Jaderson Costa da Costa
October 2016 has seen the start of the Brazilian Registry of Arteriovenous Malformation, a prospective study of malformations for the compilation of an international bank of patient information, headed by the Brain Institute of Rio Grande do Sul – PUCRS. REBRAMAV, as it is called, is intended to put together information on clinical, genetic and therapeutic aspects of patients, as well as to identify risk factors for more effective treatments in patients who have recently been diagnosed with the condition or whose treatment is in progress. The registry includes renowned universities, such as PUCRS, Universidade Federal do Rio Grande do Sul (UFRGS), Universidade de Brasília (UNB), Universidade Estadual de Londrina (UEL), among others. The activities are conducted by Prof. Dr. Jaderson Costa da Costa (director of InsCer), Prof. Dr. Marco Antônio Stefani, Prof. Dr. Ayrton Massaro, Prof. Dr. Antônio Marrone and Prof. Dr. Luiz Carlos Marrone.
The database will incorporate information of 508 patients from all over the country, including clinical, imaging, treatment, quality of life and demographic data as well as DNA samples. According to Marco Stefani, a medical doctor and researcher, around 0.5% of the Brazilian population has some kind of arteriovenous malformation of different dimensions and in different locations, and who present symptoms such as brain hemorrhage. Many of these individuals never showed any kind of symptoms. “This patients have an average bleeding risk of 3% per year, and may develop epileptic seizures and neurological deficit”. He claims that the national registry can be important for doctors’ and patients’ decision-making in the long run. “Today we know that 30% of the patients who undergo surgery end up with aftereffects or die. Because of that, the main question to be addressed in each case is whether it is worth to operate or the best solution is to keep monitoring the condition”, claims he. REBRAMAV relies on the support of the following researchers: Dr. Maicon Falavigna and Dr. Regina Kuhmmer Notti, from the Institute of Education and Research of Moinhos de Vento Hospital, in Porto Alegre.
Many publications make reference to the study, such as the ARUBA research, which is intended to attest whether or not it is worth to treat an arteriovenous malformation that has never caused any bleeding but which has enabled the conduction of relevant clinical tests that have changed how these malformations are treated, as published in the journal Lancet in 2014. According to researchers, the idea is to include REBRAMAV in MARS II, a study conducted by University of California – San Diego (USA), Columbia University (USA), Mayo Clinic (USA), Barrow Neurological Institute (USA), University of Toronto (Canada) e University of Edinburgh (Scotland), among others.