Hematopoeitic Stem Cell Transplantation Outcome Data Management: Importance of Establishing an Institutional Database
L. Tucunduva, E. Gluckman, V. Rocha
2018
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Key Takeaway Key Takeaway: Effective hematopoietic stem cell transplantation database establishment is crucial for supporting clinical decision-making and ensuring data quality and confidentiality for optimal patient care.
Abstract
The acknowledgment of hematopoietic stem cell transplantation (HSCT) as the standard of care for many hematological and non-hematological conditions in recent years was only possible because of the development of high-quality international registries, such as the European Society for Blood and Marrow Transplantation (EBMT) and the Center for International Blood and Marrow Transplant Research (CIBMTR), which provided innumerable studies on HSCT indications, technique, and outcomes. Establishing an HSCT database and registry requires careful planning, from its design up to data collection, analysis, and reporting; assuring data quality and confidentiality. The major purpose of all registries should be to address focused analytical questions to support clinical decision-making, leading to best patient care. In this chapter, we discuss the key steps in the establishment of an effective HSCT database and present the main international HSCT registries and donor registries, as well as outlining increases in HSCT data collection and registration worldwide.