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Registry Upgrade Project

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.

Challenges

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  link clinical data to biobanking for defined subset of patients arising from defined EBMT activities.

"Project 2020"

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”.

UPDATE (March, 2017) 

The EBMT has appointed Elsevier to work on our new registry system. The development will be based on MACRO, a powerful, flexible and user friendly Electronic Data Capture system that can be customised further to meet EBMT Registry requirements. A short video on this product is available here.

We will keep you updated as the project progresses.


 

Four reasons to develop the new system 

  1. DATA QUALITY = Increase ​the scope and quality of the data available for research, facilitating future implementations and data analysis
  2. 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
  3. 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
  4. 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:
 
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)
Anonymous donors
 
 
 
 
 

 
 
 
 
 
 
 
 
 
 
 
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EBMT MACRO Overview.mp4EBMT MACRO Overview.mp4
 

 News

 
15/03/2017
​March 2017 | Volume 56 - Issue 2... Read more >>
05/10/2016
​EBMT TV returns to 2017 Annual Meeting... Read more >>
26/09/2016
​The EBMT has contributed to the Innovative Medicines Intiative... Read more >>
10/05/2016
​More than 60 EBMT centres have already started entering their related donor data. We want to invite... Read more >>
 

 Events

 
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