REBRAMAV - Brazilian Registry of Arteriovenous Malformations
Coordinator: Prof. Dr. Jaderson Costa da Costa
Members: Prof. Dr. Marco Antônio Stefani , Prof. Dr. Ayrton Massaro , Prof. Dr. Antônio Carlos Huf Marrone and Prof. Dr. Luiz Carlos Porcello Marrone .
The database will include information from 508 patients across Brazil, including clinical, imaging, treatment, quality of life and demographic data, as well as DNA samples. According to Marco Stefani, about 0.5% of the Brazilian population has some type of arteriovenous malformation, of different sizes and locations, with a variety of clinical presentations such as cerebral hemorrhage. Many of these individuals have never experienced any symptoms. "These patients have an average risk of bleeding of 3% per year, and they may develop epileptic seizures and have neurological deficits". The doctor and researcher warns that the national registry may be important for decision-making by doctors and patients for long-term follow-up. “We know today that 30% of patients who undergo surgery have permanent sequelae or die. Therefore, the main question to be answered in each case is whether it is worthwhile to operate or the monitoring of the malformation is the best way ”, he points out. REBRAMAV has the collaboration of researchers Dr. Maicon Falavigna and Drª. Regina Kuhmmer Notti, Institute of Education and Research, Hospital Moinhos de Vento, Porto Alegre.
The study is referenced in publications such as the ARUBA research, which seeks to establish whether it is worthwhile or not to treat an arteriovenous malformation that never bleed and that conducted important clinical trials that changed the treatment of malformations, published in the Lancet in 2014. The objective, according to the researchers, is to integrate REBRAMAV to the MARS II study, carried out by the University of California - San Diego (USA), Columbia University (USA), Mayo Clinic (USA), Barrow Neurological Institute (USA) ), University of Toronto (Canada) and University of Edinburgh (Scotland), among others.