Читать книгу Blood and Marrow Transplantation Long Term Management - Группа авторов - Страница 37

APBMT has a data center in Japan and has been collecting information regarding the numbers of HCTs according to HCT type, donor type, stem‐cell source, and disease type in each country/region annually since 2007 (APBMT Activity Survey). Six countries/regions that have their own national registries (Australia, New Zealand, India, Republic of Korea, Japan, and Taiwan) submit data through their national registry annually. In China and Malaysia (until national registry systems were established), Iran, and the Philippines, one contact person from a major transplant center has collated the numbers and target diseases of HCTs performed in their countries each year and has submitted these data. Hospitals or centers in Bangladesh, Hong Kong, Myanmar, Pakistan, Singapore, Sri Lanka, Thailand, and Vietnam submit their data individually to APBMT Data Center, where data are combined as a national data of each country. At the end of 2017, APBMT Data Center had not yet received data from Cambodia, Indonesia, Mongolia, and Nepal, though certain HCT activities were known to have occurred in these countries. The total number of HCTs performed in the Asia‐Pacific (AP) region in 2015 was 17,572, and the annual number of HCTs performed in the AP region has continued to increase, exceeding 10,000 each year since 2008, with over 200,000 total HCTs performed between 1986 and 2015 [41]. The total population of APBMT member countries/regions comprised approximately 55% of the world’s population in 2018 [42], thus, a continued increase in the numbers of HCTs in APBMT countries/regions is expected.

APBMT Data Center launched the APBMT Outcome Registry in 2009, and are collecting individual patient data using the Least Minimum Dataset (LMD). When data collection started, data were submitted on Excel spreadsheets in PDF (hard copy). The collection rate remained at approximately 40% of HCTs reported through the annual APBMT Activity Survey as of 2018. The APBMT Outcome Registry accepts data registered through national registries. The countries/regions with active national registries submitting data to the APBMT Outcome Registry include Australia/New Zealand (Australasian Bone Marrow Transplant Recipient Registry [ABMTRR]), Japan (Japan Society for Hematopoietic Cell Transplantation [JSHCT] / Japanese Data Center for Hematopoietic Cell Transplantation [JDCHCT]), and Taiwan (Taiwan Society of Blood and Marrow Transplantation [TBMT]). APBMT encourages and assists with the establishment of national transplant outcome registries. Global collaboration in the HCT community has led to data sharing/transmission from the Center for International Blood and Marrow Transplant Research (CIBMTR) from the centers that agreed upon the data sharing. This approach has been working very well for some centers in India, Pakistan, and Singapore. To further improve data submission, APBMT Data Center developed and launched an electronic data capture system in August 2019. With this system, we can receive data from each center, and create national data for each country/region; therefore, the APBMT Data Center anticipates an increase in the number of outcome data collected.