Strategies to Increase the Number of Centers Reporting Data to the Center for International Blood and Marrow Transplant Research (CIBMTR)

Abstract

<h3>Introduction</h3> Many developing countries do not have a consolidated registry to report hematopoietic stem cell transplant outcomes (HSCT), what poses a great challenge to understand the HSCT results. The CIBMTR is an excellent strategy for these countries to report, validate, and to have their own nationwide data. <h3>Objective</h3> To report strategies and tools developed in Brazil to increase the number of active centers reporting data to the CIBMTR. <h3>Methods</h3> The Brazilian Society of Bone Marrow Transplant (SBTMO) and Sao Paulo State Bone Marrow Association (AMEO), in partnership with the CIBMTR and support from the Brazilian government (PRONON-SUS), have outlined strategies and developed tools to improve data reporting: data managers visited the CIBMTR for specific training, online-based learning tools were developed in Portuguese; the SBTMO has constituted a formal data manager working group and has worked on a formal agreement with the CIBMTR to have organized nationwide data back to the country. The data managers group organized an online real time communication tool (WhatsApp) with the senior data managers and with an outstanding Portuguese-speaking staff of the CIBMTR (Figure 1). <h3>Results and Discussion</h3> Since the beginning of the project in 2016, the number of centers registered at the CIBMTR has increased from 24 to 33 and among them, the number of centers with current reports increased from 9 to 16 (Figure 2). With the expected delay in starting this process complete CIBMTR affiliation, inclusion of new centers in the study for reporting data in the nationwide Platform, submission to the local ethics committee, and training of data managers, we expect this number to further increase in the next months. There was a 50% increase in the number of participants at the SBTMO meeting organized for Brazilian data managers, 23 participants in 2017, and 52 in 2019. The participation of data managers at the Tandem Meetings increased from 3 in 2016 to 10 in 2019. The SBTMO data managers working group has their mission, vision and values published in the society's webpage. A multicenter study was approved in 2017 to send national data to the CIBMTR and in 2019 it gained Central Brazilian IRB (CONEP) approval, currently with 19 participating centers. AMEO has started training of new data managers with governmental support (Pronon), currently with 144 students from 36 centers. <h3>Conclusion</h3> The actions developed in our country have reached a large number of centers and professionals being prepared to report high quality data to the CIBMTR. The SBTMO recognition may help to establish data managers as an official activity in the country. We hope the Brazilian example may encourage other centers and countries, ultimately aiming at improving the quality of care for patients who need HSCT.