Sharing data with the EBMT

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Sharing data with the EBMT What is the EBMT?
A non-profit organisation created in order to
allow scientists and physicians involved in
clinical bone marrow transplantation to share
their experience and develop co-operative
studies. The EBMT aims to promote all aspects
associated with the transplantation of
haematopoietic stem cells including basic and
clinical research, education, standardisation,
quality control, and accreditation for transplant
procedures.
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Sharing data with the EBMT Why?

• EBMT / JACIE accreditation
• Auditing
• Research

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Sharing data with the EBMT How?

• The database and ProMISe2
• Med-A versus Med-B data collection forms
• Registration
• Paper (send to Data Office, Paris)
• Internet (ProMISe)
• Ethical and legal issues
• European Union Directive
• Patient consent

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EBMT Registry Database
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Sharing data with the EBMT When?

• Schedule
• First report, the earliest of
• 3 months post transplant
• At time of death
• Follow up , the earliest of
• 1 year from last report, yearly
• At time of death

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Sharing data with the EBMTDocumentation and help

• http//www.ebmt.org/4Registry/registry1.html
• Med-A and Med-B collection forms
• Med-AB manual
• ProMISe access application forms
• Data entry manuals
• Data retrieval manuals
• Catalogue of pre-programmed queries
• registryhelpdesk_at_kcl.ac.uk

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