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The Registry Upgrade Project

In February 2016, the EBMT Board made the important decision to develop a new Registry system which will be operational in 2019. Elsevier was appointed in 2017 to work on this new system based on MACRO, a powerful, flexible and user-friendly Electronic Data Capture system that can be customised to meet EBMT Registry requirements. 

Contact the Helpdesk with questions

Questions & Answers

The newly upgraded Registry will be 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. Get answers to some of the other most commonly asked questions below.

Why upgrade the Registry?

The EBMT has the paramount responsibility to not only maintain the Registry but also keep pace with the current developments in technology and regulatory requirements. Our reasons for developing the new system include:

  • 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, a reduction in the volume and complexity of the documentation, and the sharing of implementation overheads
  • FRIENDLINESS = Facilitate the work of 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; and increases the number of integrated collaborators, thus decreasing the data-reporting burden for centres
  • COLLABORATION = Broaden 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); and allows for use of biological samples

In addition to these four criteria, the EBMT will  link clinical data to biobanking for defined subsets of patients arising from defined EBMT activities.

Which donors have contributed substantially to this project?

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)
  • Gruppo Italiano per il Trapianto di Midollo Osseo (GITMO)
  • 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

Which is the new system that will be used?

The EBMT has appointed Elsevier to work on our new registry system. The development will be based on MACRO, which is an Electronic Data Capture system that is user-friendly, flexible and powerful. It will be further customised to serve the particular needs of the EBMT Registry. You can watch a short video and a presentation on this product below.

What is the project timeline?

The development of the new Registry system is expected to become operational in February 2019.

Who can I contact for additional information?

For additional information about the project, you can contact the Registry Helpdesk:

Tel.: +44 207 188 8408
Fax: +44 207 188 8411
E-mail: registryhelpdesk@ebmt.org

Key Personnel

Steering Committee

Evaluation Group

Need help?

The personal data provided will be processed according to the General Data Protection Regulation (GDPR 2016/679 ) and incorporated to a file property of EBMT which will be allocated in the EEA (European Economic Area) or in countries that are provided with the same level of protection for privacy such as countries that adhere to EU-US and Swiss-US Privacy Shield Frameworks.
Data Subjects have the right of access to his or her data and the right to rectification of any inaccurate or incomplete personal data. The Data Subject also has the right to withdraw consent, this wish will be respected, and the personal will no longer be made available. If the processing operation is unlawful the Data Subject has the right to request deletion of that data. Please write to data.protection@ebmt.org