Among the international and regional registration systems, the CIBMTR registration system and the EBMT Registration System are Well known HSCT registry systems founded in 2004 and 1974. Now, they register hematopoietic stem cell transplants from all over the world. Members of the European Society of Blood and Bone Marrow Transplantation include Austria, Belgium, Denmark, Finland, France, Czech Republic, Germany, Greece, Ireland, Israel, Netherlands, Italy, Norway, Spain, Switzerland, Sweden, United Kingdom, Hungary, Turkey, Argentina, Singapore, Saudi Arabia, Slovenia, South Africa, and Lebanon. . However, some European countries, such as the United Kingdom and Germany, also have separate national registries, such as the British bone marrow registry (BBMR) and German Stem Cell Transplantation Registry (DRST).
Another regional-international center to collect and maintain HSCT data, CIBMTR, was created to improve transplant patients' survival, treatment, and quality of life. It was a research collaboration between the National Marrow Donor Program (NMDP) / Be the Match and the Medical College of Wisconsin (MCW). The CIBMTR registry collects allogeneic transplantation outcome data mandatory and autologous transplantation outcome data from volunteers in the U.S. In addition, it also manages and maintains the allogeneic and autologous transplantation data from other countries worldwide volunteer. Up to now, in the CIBMTR registry, 575000 HSCT recipients' data are registered [17, 18], and more than 500 stem cell transplant centers around the world register transplant information in the U.S. International Bone Marrow Transplant Research Center registration system.
There are two active systems in the registration of bone marrow and stem cell transplantation among the regional registration systems. The Eastern Mediterranean Bone Marrow Transplantation System was launched in the Eastern Mediterranean region in 2008 and now registered and maintains records of HSCT data from Algeria, Egypt, Iran, Jordan, Lebanon, Morocco, Oman, Pakistan, Saudi Arabia, Syria, Tunisia, and Qatar centers. The Asia-Pacific Bone Marrow Transplant Registration System, in collaboration with Asia-Pacific, was established in 1990 and now records transplant information from the transplant centers of Australia / New Zealand, Bangladesh, Cambodia, China, Hong Kong, India, Indonesia, Iran, Japan, Myanmar, Pakistan, Philippines, Singapore, Sri Lanka, Taiwan, Thailand, Vietnam, and Mongolia.
These international and regional systems' minimum data set (MDS) was examined. MDS of South-Asian and Eastern Mediterranean transplant registration systems almost exists in the EBMT-Minimum Data Set. The most comprehensive datasets belong to the EBMT and CIBMTR Systems. The data items of these two international registry systems were compared and presented in Appendix 1.
Each system's number and data items are different based on its purpose and mission. However, given that both the CIBMTR and EBMT systems have been developed to advance stem cell therapies and conduct research, in general, these two systems all have approximately the same coverage.
In both systems, pre-transplant information, disease information, and post-transplant information are recorded on day zero, 100 days after transplant, six months after transplant, and annually.
The two registers differ in structure and data elements in several respects: In the EBMT registry, in addition to registering MDS and MPN disease information, it is also possible to record disease information related to the combination of MDS / MPN, and EBMT-MDS has its questionnaire. In comparison, the particular questionnaire on MDS / MPN disease combination is not available in the CIBMTR dataset. The data elements of the designed system also include items related to the combination of MDS / MPN disease.
In the EBMT registry, the Bone Marrow Failure Syndrome Information Questionnaire includes acquired and congenital diseases of the bone marrow Failure Syndrome. Still, in the CIBMTR registry, the information questionnaire comprises the form of hereditary bone marrow failure syndrome and aplastic anemia. Because hematopoietic stem cell transplants for patients with this syndrome are not performed at the Imam Khomeini hospital complex Transplant Center, items related to this disease were removed.
One of the differences in recording pre-transplant information in the two registries with the developed registry in this research is the number of recording chromosomal and molecular analysis information. In the CIBMTR registry, information related to chromosomal analysis and molecular analysis of patients is often recorded three times: i) at diagnosis, ii) at the time between diagnosis and the start of regimen preparation or the last evaluation, and iii) at the time of the last evaluation. Whereas in the EBMT registry, this information was recorded at diagnosis. In Imam Khomeini hospital complex Transplant Center, the mentioned analyzes, if possible, are performed only before the transplantation and registered only once.
In the CIBMTR registry in chromosomal analysis, the results of the FISH and Karyotype methods are recorded separately by the technique. In contrast, in the EBMT registry, the results of either the FISH or Karyotype methods can be recorded without specifying the exact type of method. In the designed system, the information containing the separation of this method has been removed by obtaining a CVR of less than 0.99.
In the CIBMTR system, out of 777 given items, 751 items were collected and registered. In the EBMT system, 657 required data items have been collected and combined with other elements. In total, a checklist and a questionnaire containing 1576 data elements have been obtained, 399 of which, due to the existing limitations and comments and reviews performed by the expert team, gained CVR with less than 0.99 and were removed, and 1177 items were approved for the design of the registration system.