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Important updates about the EBMT Registry

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By Bas Middelkoop, EBMT Registry Director

MACRO

The last six months have been quite eventful for the Registry staff, to say the least. As mentioned at the Annual Meeting we have been working with our vendor Elsevier to prepare the MACRO system for go live. Unfortunately, the migration of the ProMISe database was not concluded as expected. It was too complex and unexpected hurdles on both sides have prevented a go live. After many meetings and discussions with Elsevier, EBMT Board came to the conclusion in alignment with Elsevier to part ways and end the contract.

So now what?

Until a new Registry platform will be in place, we can continue with ProMISe at least until 12/2022.

Current and further steps

FLASH

In view of our recent experience with MACRO, the Registry has initiated a multi-component project called FLASH, with the objective to increase our chances of successfully transitioning to a new Registry platform.

We are obviously revisiting our requirements for the new Registry platform. We have sought input from different corners within EBMT but we are also preparing a survey in order to seek input from the wider EBMT community.

At the same time, EBMT is looking to simplify our data model by converting the Registry data to a common data model (CDM). On that note, the Registry has been successful in the application to join the EHDEN project (https://www.ehden.eu), and we are receiving funding to help us with this conversion.

Finally, we will shortly be commencing the revision of our data collection forms. A large group of subject matter experts has been identified within the EBMT community, and work has started including the idea of having a modular approach to data collection.

FLASH as a project will assist in the modernisation of the Registry and the move to a platform that complies with all the EBMT requirements. The second phase of FLASH will be all about the process of identifying this platform that will be the new data capture system for the EBMT going forward.

OTHER

Within the last 6 months a number of Registry staff that you might have become familiar with over the years have moved on to new endeavours. Although the departure of old staff has been a great loss for the Registry, we can already see the positive impact the employment of new people has had on the new path the Registry is taking. Announcements regarding the new Registry staff may be a bit slow, but I am sure that many of you have already spotted Lisl Smit who has replaced Asterios Kasmiris as the main point of contact on the Registry Helpdesk. She will be supported by Sophia Jehangir-Stevens who just recently joined the team. But also, within other departments we have welcomed new staff. Paula Busto, Marina Atlija and Ignacio Garcia are our new data analysts. The Registry incorporated the membership department recently and hired Patrick Agito as the one who deals with all membership request. And in August we will welcome Carnia GroƟ to the team as Senior Data Manager.

Last but not least, development of our Cellular Therapy database is also still ongoing, and something we are making progress in. We are committed to update you on the progress of this development on a more regular basis. However, if there are any question related to this or any other topic regarding the Registry, please do not hesitate to contact us at registryhelpdesk@ebmt.org.