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Registry Committee

The EBMT maintains a Registry of haematopoietic transplant procedures, which as of 2018 contains more than 630,000 entries. The collection of data was initiated prospectively in 1975, and the Registry data is behind a large proportion of European research output, translating into changes in clinical practice and improvements in patient outcome and care. The rapidly changing environment of the transplant field requires the Registry to be flexible and expandable in order to maintain its pivotal role in supporting physicians, researchers and doctors - in the clinical and business sectors - in their efforts to investigate new treatments, save patient lives and improve patient care. 

Registry Committee Team

Committee Objectives

Since 2011, the committee has advised on the functional development of the Registry in the context of EBMT Strategy and the scientific evolution of the HSCT and cellular therapy fields.

Activities

  • Support the development and implementation of the new EBMT Registry software as part of the Registry Upgrade Project
  • Overseeing and revising the EBMT data collection process

Strategy

  • The RC members will use their expertise to ensure that the Registry develops in line with the current scientific needs and future evolution of the HSCT and cellular therapy fields
  • The RC will advise and inform the Board regarding current and future Registry projects, including the Registry Upgrade
  • The RC will analyse functional requirements, cost-effectiveness and the feasibility of Working Party or Committee requests

Committee Members

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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