Timely Capture of Relevant Data for Cibmtr

Introduction: Each hematopoietic stem cell transplant (HSCT) performed and fully reported to CIBMTR generates key information to support research that has cumulatively led to increased survival and enriched quality of life of thousands of patients. Between 50 and 60 HSCT (autologous, related and unrelated) are now annually performed at the Pediatric Oncology Institute, São Paulo, Brazil. The program started in 1999 and the first 167 transplants were reported by physicians and by the Cell Processing Laboratory staff. However, over the past 4 years, the institution was unable to keep up with the reporting schedule due to increasing working load. In February 2012, the effort to report all new and old patients to CIBMTR was resumed.

Objective: To report and share the strategy used to have all 629 forms efficiently updated and reported within 8 months.

Methods: The institutional efforts started by hiring a trained CRA part time devoted to CIBMTR data management.  A very useful and comprehensive Excel-based spreadsheet was developed to have visual display of all due dates with colorful flags and automatic updates to the current date. Work flows were developed to capture data during weekly medical rounds. All sources of medical information – charts, laboratory and radiological reports, medical round reports - were accessed whenever necessary and included in the patient charts as documented source of information. All forms were weekly reviewed with a senior physician to ensure appropriate training and education of the new CRA.

Results: A total of 360 patients underwent HSCT between 1999 and September 2012. The CIBMTR forms had been last updated in 2008 and no new patients were registered since then. All information that posed the greatest challenges to be found for Pre-TED and Post-TED Forms were included in the new work flow. A list of disease-specific staging was developed to guide disease status at annual evaluations. A visual approach was created in the spreadsheet to track forms completion with all patients due dates as follows: green - form may be completed, red - time to complete form has not yet been reached, blue - form is ready to be reported, yellow - form must be reviewed, purple - patient underwent another HSCT and black - death.

Conclusion: In October 2012 our goal was achieved and we were able to update and report all 193 patients. Team work and new efficient tools allowed control of due dates and optimization of time spent with data capturing, CRA/physician meetings and forms review. All items from all patients will now be timely reported.