Strategic Actions for Improving the Adherence of Brazilian Transplantation Centers to the CIBMTR Registry

Background: The difficulty of evaluating the results of hematopoietic stem cell transplantation (HSCT) in Brazil is due to the lack of a national data registry system. Many hospitals in the country still lack an appropriate information system, and data are often stored in a non-standardized way, without integration to other centers, which makes outcome analyzes for scientific production impossible. The CIBMTR (Center for Blood and Marrow Transplant Research) has become an option for data registry. However, the number of Brazilian centers registering data in the online system is decreasing: from the 21 Brazilian centers registered in CIBMTR between 2010 and 2015, only 9 centers remained active in 2010, and 7 centers in 2015, which also reflected a decrease in the number of transplants registered in CIBMTR. In 2010, only about 34% of the transplants performed in Brazil were registered in the CIBMTR, and 20% in 2015 (Graphic 1). Objectives: To increase the number of Brazilian centers in the CIBMTR, identifying the reasons why the centers do not register their data, to propose incentive actions so that the centers can resume registration. Methods: Three Brazilian centers, experienced with the registration process in CIBMTR database, have developed systematic actions. These began in 2016 with visits to the CIBMTR; the holding of Brazil's first meeting of data managers, during the Brazilian Society Congress; the development of an online tutorial on completing CIBMTR forms, and the creation of a Brazilian form; and encouragement to the other Brazilian transplantation centers to become involved. Results: After the educational and incentive actions, the total number of centers registered in the CIBMTR increased from 21 to 26, with 1 new active center (from 7 to 8 active centers) in the first half of 2017 (Graphic 2), and with a perspective of 12 active centers by the end of 2017. Conclusion: Although still early, improvement actions had a positive effect on the insertion of data by Brazilian centers. The continuity of these strategies is of great importance for the centers to understand the importance of registering their data.