Challenges and Strategies of a Brazilian Transplant Center (TC) to Report Data on Stem Cell Transplantation (HCT) in an International Database: Experience Report

Abstract

Introduction Although there are 70 TCs in Brazil, the HCT data reporting (DR) for a local database has not been made feasible yet; beyond that, the number of Brazilian TCs reporting for any international research database (IRD) is still small. Reporting HCT data for an IRD generates scientific information, enabling medical professionals to understand and analyze the HCT results among the TCs worldwide. This TC performed 670 HCTs (autologous and allogeneic) along 13 years. In January 2017, we started to submit data to the CIBMTR (Center for International Blood & Marrow Transplant Research). So far, 154 forms have been reported: 110 Transplant Essential Data (TED) forms and 44 Comprehensive Report Forms (CRF). The main challenges faced in the beginning were the following: understanding the data flow and identifying the data to be reported, taking part in online trainings (all offered in English language), seting up the DM team and implementing a process to help data collection. This TC's DM team consists of 2 nurses and 1 secretary working on part-time basis and partially focused on data management. DM collects data from patient's medical files, organize, scan and store data, and report follow-up and current HCT data on the FormsNet3 platform. Objective Show how this TC is structured to report data for an IRD. Introduce the strategies developed to cope with the challenges arisen along the process. Suggest alternatives to enhance the quality of the data collection. Methods Development of forms for each disease, both pre-transplantation and post-discharge. Development of auxiliary charts for the classification of disease, disease status, Karnofsky scale, degree of toxicities and graft versus host disease (all available in hard copy and e-file, rapidly and easily accessed from any device). Presentation meeting to introduce CIBMTR and sensitize the multiprofessional team to the impact of data registry on the researches, collaborating with the global scientific community to HCT advances. Creation of an exclusive e-mail to receive exams and other information about the patients involved in the project. Participation of the DM nurses in the weekly multiprofessional meeting and in the daily medical visit to the inpatients. Participation in local and international events addressed to DMs. Conclusion The events addressed to DMs are opportunities to share and exchange both experience and knowledge with DMs from other TCs worldwide and, consequently, improve DR. Additionally, the DM nurses participation in the hospital visits adds value to the data registry for it is an opportunity to check and detail information. Despite all the strategies developed, the data collection is still time consuming because part of the medical team are not fully sensitized to the importance of filling out the forms properly. However, the delay in reporting to CIBMTR is also due to the fact of DMs are not full time dedicated to the project.