Moloud Taheriyan1*, Mohammadre za Dabiri2, Seyed Reza SafaeiNodehi2, Sharareh R Niakan Kalhori1, Niloofar Mohammadzadeh1
Purpose: The lack of a uniform Minimum Data Set (MDS) in Iran for recording and reporting the Hematopoietic Stem Cell Transplantation (HSCT) recipients across all treatment processes leads to determining a localized MDS by considering two well-known international MDS. This study describes the required MDS development for the hematopoietic stem cell transplantation recipient registry.
Method: The study was conducted in 2020-2021. An expert panel of three hematology and oncology specialists and three medical informatics were formed. After reviewing data sets of HSCT registries, focus groups, meetings, questionnaire development and validation, an MDS was determined.
Results: The validated MDS comprises 1177 data elements in 9 sections, including pre-HSCT, leukemia, lymphoma, myelodysplastic syndrome, myeloproliferative neoplasms, combined myelodysplastic syndrome and myeloproliferative neoplasms, plasma cell disorders, hemoglobinopathy and post- HSCT. The data elements were aggregated by the expert panel based on the MDS of European Bone Marrow Transplantation (EBMT) and Center for International Blood and Marrow Transplant Research (CIBMTR) registries and the medical records of the transplantation center of Imam Khomeini hospital complex. 399 data items of 1576 were rejected according to the expert's opinion.
Conclusion: In the present study, the validated MDS were developed and will be used in the registry system in the future to record and report the uniform data items of HSCT-related data.
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