Latin American registry of patients with congenital and acquired von Willebrand disease (RL-VWD): preliminary results

Abstract

Although the prevalence of von Willebrand disease (VWD) is estimated at 1% of the general population, its prevalence is unknown in Latin America, the most populated subregion of South America, with approximately 425 million inhabitants. Since there is currently no registry of patients with VWD in the region, detailing which are the most frequent subtypes and which are the treatments used, our working group initiated the proposal of the Latin American Registry of Patients with VWD (RL-VWD). This is an observational, multicenter, prospective and retrospective, non-interventional project. Its objective is to describe the prevalence and characteristics of the disease in the region, and to ensure that each affected patient in Latin America receives the best standard treatment, based on existing international recommendations. Methods. The study population is composed of individuals of both sexes, without age limit, with congenital VWD or acquired AVWS. This project Will be carried out by collecting epidemiological, clinical and laboratory data of each patient. Results. By July 2024, 704 patients were recruited, of which 66.6% are VWD1 patients; 28.6% are VWD2 patients, with VWD2M being the most frequent subtype (37.1%). The countries that have accompanied us so far are: Argentina, Chile, Cuba, Ecuador, Mexico, Nicaragua, and Uruguay. Conclusion. This registry will allow us to obtain substantial information about this disease in our region and can serve to promote collaborative research projects and decide on appropriate health policies. We hope to increase the number of participating centers from other countries in the region, and the incorporation of a greater number of professionals interested in being part of this project.