in between routine data registration and specific cohort studies. Last, for some rare diseases, e.g. aplastic anemia, data on transplantation are supplemented by routine collection of data on alternative treatment such as immunosuppressive treatment approaches [34].
In addition to the registry, the EBMT annual activity survey [35] compiles trends of the use of transplant technology in Europe and neighboring countries. This provides data on transplant indications in a timely manner for member centers of the EBMT and nonmember centers. At the same time, activity survey data collected independently provides a source for checking completeness of reporting into the EBMT database. Information on almost 800,000 transplants has been accrued since 1990.
Benchmarking studies [36] are used to qualify the completeness of patient follow‐up across centers and to compare outcomes such as mortality among centers as a measure of patient selection and treatment quality.
Data from the registry are obviously among other things of major interest to describe outcomes of rare diseases [37] and even rare complications of rare diseases [38] and on impact of certain risk factors on early and long‐term outcome [39]. Data obtained through the registry provide a base to formulate guidelines and recommendations [40].
The Registry contains patient clinical data, including aspects of the diagnosis and disease, first‐line treatments, HSCT‐ or cell‐therapy‐associated procedures, transplant type, donor type, stem‐cell source, complications and outcome. Patients are followed up indefinitely. Basic donor information is included with these procedures and donor follow‐up data are entered. All Registry studies are performed under the supervision of one of the EBMT Working Parties.
Late effects specific data collection
The Transplant Complications Working Party (TCWP) leads efforts focused on complications and long‐term survivorship. The aim of the Transplant Complications Working Party is to conduct research as well as to provide education and expertise on the subject of non‐infectious complications after HCT. The major fields of interest of the TCWP include the following:
Early complications e.g. graft failure, VOD/SOS, transplant‐associated microangiopathy (TAM), other endothelial syndromes, impact of co‐morbidities, toxicity of conditioning regimen and supportive care; Acute and cGVHD – all aspects from risk factors through diagnosis to treatment; Late effects – e.g. infertility, sexual dysfunction, secondary cancers, organ‐specific late complications, quality of life. Variables on late effects such as fertility and secondary cancers are collected in the MED‐B forms, while the MED‐A form contains a restricted set of variables. Cause of death is obviously recorded for every patients.
Issues of long‐term survivorship data collection are many. Obviously data quality depends on the quality of education for data managers, a task taken seriously by the EBMT where data managers take part at annual education conferences to facilitate quality collection. Follow‐up at each center also poses a challenge, especially in a continent with many different countries and types of healthcare systems.
Future plans
Future areas of focus for the EBMT include specific description and analysis of long‐term complications associated with GVHD, description of quality of life, including in comparison with other treatment approaches, and more precise definition of late toxicities and secondary tumors in patients treated by HCT.
Asia‐Pacific Blood and Marrow Transplant Group (APBMT)
Minako Iida, Yoshiko Atsuta, and Shinichiro Okamoto
Introduction of the registry
Asia‐Pacific Blood and Marrow Transplantation Group (APBMT) was initiated by transplant physicians from Australia, China, Hong Kong, India, Japan, Republic of Korea, Malaysia, and Taiwan in 1990 to share the information regarding hematopoietic cell transplantation (HCT) and promote collaborative basic and clinical studies. As of August 2019, APBMT comprised 22 countries/regions (Australia, Bangladesh, Cambodia, China, Hong Kong, India, Indonesia, Iran, Japan, Korea, Malaysia, Mongolia, Myanmar, Nepal, New Zealand, Pakistan, the Philippines, Singapore, Sri Lanka, Taiwan, Thailand, and Vietnam) and are leading a variety of issues regarding HCT in the Asia‐Pacific region.
APBMT established the Asian Blood and Marrow Transplantation registry (Asian BMT registry) at the 11th Annual Congress of APBMT in Nagoya, Japan in 2006.
Data collection
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.
Late effects specific data collection
APBMT countries/regions are characterized by its diversity in terms of the activity of HCT, social infrastructure, regulation for medical care and research, and the age of HCT. Thirteen countries/regions started HCT prior to 2000, with Japan, Singapore, Taiwan, and the Republic of Korea starting in 1986 [43]. Bangladesh, Myanmar, Sri Lanka, and Nepal started HCT from 2014. Establishment and dissemination of HCT and improvement
