The Registry, the backbone of the EBMT
The Registry system is the major backbone for all members of the EBMT in terms of quality control, educational activities as well as research activities.
Most importantly this vital database platform has the potential to control and improve the quality of life and outcome for our patients.
To date, the Registry gathers data on more than 460,000 patients and 500,000 haematopoietic stem cell transplantation (HSCT) procedures including details on disease, transplant type, donor type and stem cell source.
The EBMT has the paramount responsibility to not only maintain this Registry but also to keep pace with the current developments in technology and regulatory requirements. For this reason, upgrading the system has become a crucial mission of EBMT.
The newly upgraded Registry aims to become a user-friendly tool, integrating data quality, increasing the efficiency of data collection and retrieval, and developing a collaborative tool that can be used by other partners (see below "Four reasons to develop the new system")
In addition to these four criteria, the EBMT will extend the Registry to cellular therapy products and link clinical data to biobanking for defined subset of patients arising from defined EBMT activities.
Update on the Registry Upgrade Project
A first attempt to upgrade the current Registry system has failed. Our contractor responsible for the upgrade, namely Remedy ceased all business operations in 2014, making it impossible to pursue the project without delay.
However, considering the importance of this project and anticipating that technical challenges will be our continuous companion, over the last year the EBMT Board of Association has developed a novel concept to guarantee the urgently needed technical upgrade, as well as to be prepared in the future for additional technical innovations.
In February 2016, the EBMT Board made the important decision to allocate a substantial part of EBMT benefits to continuous technical innovation. As its top priority the Board of Association has the clear objective of developing a new Registry system which will be operational by 2020.
The EBMT has named this project “Project 2020”.
Four reasons to develop the new system
DATA QUALITY = Increase the scope and quality of the data available for research, facilitating future implementations and data analysis
EFFICIENCY = Improve efficiency of data collection with an increase in centres entering their own data, a reduction in training needs, reduction in the volume and complexity of the documentation, sharing of implementation overheads
FRIENDLINESS = facilitate the work of the EBMT members by providing them with a tool for data entry and data reporting that is user friendly; decreases their data entry burden by providing intuitive data entry screens with faster response times; facilitates data review and simple access to documented reports; increases the number of integrated collaborators thus decreasing the data reporting burden for centres
COLLABORATION = widen the use of the data by co-opting organisations which share the same objectives as the EBMT, facilitating their access to a tool that meets their needs; widening the scope of research projects (donor+patient projects); use of biological samples
Last fundraising campaign
The EBMT is grateful to the following donors who have contributed substantially to the project:
Deutsche Knochenmarkspenderdatei (DKMS), Germany
Société Française de Greffe de Moelle et de Thérapie Cellulaire (SFGM-TC)
Anthony Nolan Donor Registry, United Kingdom
National Health Service Blood & Transplant, United Kingdom
Belgian Transplant Registry
East Mediterranean Bone and Marrow Transplantation (EMBMT)
Swiss Blood Stem Cell Transplantation group (SBST)
Czech Society of Haematology
Grupo Español de Trasplantes Hematopoiéticos (GETH)
British Society of Blood and Marrow Transplantation (BSBMT)
Karolinska University Hospital, Stockholm, Sweden
Hospital Universitario Virgen de la Arrixaca, Murcia, Spain
Miltenyi Biotec (provided a grant for training)