Minimum dataset development for Hematopoietic stem cell transplantation (HSCT) recipient registry in Iran

Taheriyan M, SafaeiNodehi S, Kalhori SRN, Mohammadzadeh N.
Preprint from
Research Square
31 May 2022


The lack of a uniform minimum dataset (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 datasets 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.