Unification of hematopoietic stem cell transplantation registries in Japan and establishment of the TRUMP system

Abstract

There are 4 registries of hematopoietic cell transplantation in Japan; the Japan Society for Hematopoietic Cell Transplantation (JSHCT), Japanese Society of Pediatric Hematology, Japan Marrow Donor Program, and Japan Cord Blood Bank Network; each play an important role in society by reporting the number and outcomes of transplantations and contributing new findings obtained from studies on individual topics. However, there have been a number of issues with the difficulty of analyzing data in overlapping registries and multiple databases at centers affiliated with each of the 4 registry organizations. JSHCT was pivotal in orchestrating the computerization and unification of hematopoietic stem cell transplantation registries for the purpose of resolving these issues and providing a more accurate awareness of hematopoietic stem cell transplantations being performed in Japan. JSHCT played a central role in developing the "Transplant Registry Unified Management Program (TRUMP)" to enable transplantation institutes to manage patient information with emphases on convenience to institutes, safety of patient information, and quality of data management. While enhancing domestic registries, the program seeks to coordinate with other hematopoietic cell transplantation registries around the world to contribute to the development of registries throughout Asia.

The role of hematopoietic stem cell transplantation for relapsed and refractory Hodgkin lymphoma

“…Patients with HL aged more than 15 years who underwent a first autologous or a first allogeneic HSCT between 2002 and 2009 were included in this study. Clinical data for these patients were obtained from the Transplant Registry Unified Management Program (TRUMP) [7], which is the registry data of the JSHCT. We excluded patients who underwent HSCT in first complete remission (CR), since previous randomized studies have not supported the benefit of HSCT in first CR [8,9].…”

Salvage allogeneic hematopoietic SCT for primary graft failure in children

“…A total of 102 patients were analyzed based on data reported to the Japan Society for Hematopoietic Cell Transplantation (JSHCT) registry 23 (Table 1). The patients were selected according to the following criteria: (1) age 18 years or younger at salvage HSCT; (2) engraftment not achieved by a prior allogeneic HSCT and salvage allogeneic HSCT was performed; (3) salvage HSCT performed within 60 days after the first HSCT; (4) both the first and salvage HSCTs performed between 1982 and 2010.…”

Prophylactic and therapeutic treatment of graft-versus-host disease in Japan

“…However, what was surprising is that most studies were performed in a single institute and included a small number of patients, resulting in biased conclusions. Given the establishment of the "Transplant Registry Unified Management Program" in the JSHCT [161], it is important to actively use not only detailed data in limited institutions, but also large-scale registry data to obtain more reliable results in the future.…”