EBMT NEWSLETTER | July 2015 | Volume 47 - Issue 2

Important dates

Registry Upgrade Project

Talks are ongoing regarding the next steps for the Registry Upgrade. Liaison, the company that purchased the Remedy Informatics assets, recently provided a roadmap as a basis for discussion.   
In parallel, the EBMT is requesting proposals from other interested vendors, which will be assessed together with Liaison's proposals.

Data Management sessions at EBMT 2015

We received very good feedback overall and the data management sessions scored highly in the general survey to all delegates. Many presentations are available at the following link: http://www.ebmt.org/Contents/Data-Management/Helpdesk/Pages/Helpdesk.aspx along with the feedback report.  We will be using the suggestions and comments which have been made to help us prepare the Data Management sessions for next year’s Annual Meeting in Valencia.

We are editing the ProMISe training recordings and these will be added in the same location as the user guides on www.ebmt.org -  [Data Management] – Data Submission.

ProMISe version 3

The Registry switched to the upgraded version of ProMISe in April 2015. The ProMISe User Guide has been updated.

Existing users can now manage passwords themselves online. Users can also benefit from a new secure download facility to exchange files. More details on this facility are available in the Data Retrieval training summary. For those performing regular scheduled downloads, it is important to note that you have to log in and go to the secure download facility to obtain the download, as they are no longer emailed automatically.

We have had some reports regarding the slow speed of HLA data entry and this will be looked into by the designer.

Updates to disease coding

Many disease codes have been updated in line with the WHO 2008 classification and information has been emailed to all ProMISe users. We have updated the database; the data collection forms; MED-AB manual and disease classifications help file.  The Lymphoma will be updated shortly while Inherited Disorders codes are still being reviewed.

Unique Patient Number (UPN) policy

Regarding hospital numbers (UPN) provided by centres for patients: our policy is to always use the very latest UPN provided. Each patient should have one unique UPN, regardless of the number of transplants. If there is concern about losing previous UPN information, please transfer that to the optional field in the patient record called “Dossier number” in the database.

Data Management News

Full details on all Data Management issues can be found in our Data Management News. If you would like to be added to the Data Management mailing list or have any questions, please contact us at registryhelpdesk@ebmt.org
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