EBMT NEWSLETTER | November 2017 | Volume 59 - Issue 5

Important dates

Project 2020: Registry Upgrade

Since our last update the Registry replacement project has continued to progress.  The list of software requirements for the EBMT has been completed and approved, and the first tranche of software developments are in place and testing has been largely successful. The Registry design is almost complete and should be ready for a wider set of users to test at the end of November. Data migration planning has commenced, and initial data mapping has been drafted.  The project has acquired a project manager, Nigel Brook.  With his help we have mapped out the programme to implementation.

We continue to work well with the supplier, Elsevier.  Their enthusiastic team has provided us with solutions to registry issues that exceeded our expectations.  
There is still much to do, and the help of EBMT members and staff will be crucial in achieving the project ambition to capture high-quality outcomes data that meets the needs of all stakeholders. 

First impressions of Macro 

Staff at the EBMT Registry Office have been involved in the initial testing of the Registry Design. It is early days, but they have reported a user friendly experience in Data Entry with simple screens. They found it easy to establish the type of data required through the use of radio buttons and drop-down lists. It is no longer necessary to create new records for drugs or cytogenetics such as we have in the current system. In Macro we can instead enter multiple drugs or results in a table, where it will be easier to select from results which are more relevant to a particular disease. Testers also found improvements in identifying missing data and incorrect data.

Example Data Entry of Cytogenetics in Macro
We have been testing some very useful features in Macro for managing and clarifying data within the system. Users can make notes and comments on particular data items for a patient, either for their own use or to communicate with other users in their group or with EBMT. This helps with efficiency and data security by decreasing email explanations and disclosing patient identifiers. 

Test users have also found the data structure to be more flexible, for example the possibility of reporting more than one diagnosis at a time with separate tests and assessments for each disease.

We are in the process of widening our pool of testers and are using the Data Registries Group (DRG) to achieve this. The DRG consists of National Registry staff and EBMT staff working in Data Management, Study Coordination and Statistical Support. At the most recent DRG meeting, where a demonstration of MACRO took place, a request was made for attendees to enquire within their respective setups and supply the Registry with names of volunteers.  We are pleased to have received many generous offers since and continue to hope for more.

End user engagement

We hope very soon to open a demo site for EBMT centre data managers to visit and gain some appreciation of the Macro software package. Although not the final package, it will provide an opportunity for users to give feedback on their experience. 


As the development programme takes shape we have been able to set some targets. In planning the project end to end there is always a risk in setting dates that raise too high expectations and we have tried to work around that. We need to take into account that the software development is only part of the project, and the provision of adequate documentation and training are just as important. To achieve all this, the team is aiming to create a sufficient buffer so that end dates need not be changed even if some activities end up being delayed.  In the graphic below, the key project workstreams are shown.  

As can be seen, our current working date for go-live is November 2018. 

We look forward to providing further updates as the project progresses.  For any comments, suggestions or questions, please email registryhelpdesk@ebmt.org 

Ronald: Simply the best

Ronald Brand (Biostatistician and Professor of Good Research Data Management at Leiden University) retired in October and we would like to wish him the very best in this new chapter of his life.

Ronald has worked tirelessly for the EBMT over the last few decades as a Statistician for the Chronic Malignancies Working Party & as the Designer of ProMISe. He has contributed to many research projects, courses and symposia. At one time in the not too distant past, EBMT centres using Project Manager were mailing floppy disks with disparate data to be merged manually. This later became Project Manager Internet Server – also designed by Ronald - and now known as ProMISe (version 4!). ProMISe has revolutionised the way that EBMT submits and analyses its data.

Ronald is well known for his uniquely programmed mind. He spent many hours writing pages and pages of emails to the Registry Office to help us understand his logic. His most popular catchphrases became “It’s not logical!” and “Simply…”.

He received the Outstanding Achievement Award at the 40th EBMT Annual Meeting in Milan. During his speech he told the audience that he considers EBMT colleagues as his friends, and the feeling is mutual. We are very grateful for his valuable support and friendship.

Ronald Brand receiving the Outstanding Achievement Award from Alejandro Madrigal

Fortunately for us it is a ‘gentle’ retirement because Ronald continues to have a role in the EBMT benchmarking project with JACIE, and we look forward to seeing him at some EBMT meetings in the future.
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