EBMT NEWSLETTER | January 2016 | Volume 50 - Issue 1

EBMT
Important dates
Content:
New expanded MED-A is up and running
15th Meeting of the Data Management Group
Donor data needed for new Donor Outcomes Registry

New expanded MED-A is up and running

We are pleased to report that the new MED-A has been successfully implemented in the Registry database. The new data collection form brings the following changes and benefits:

Changes

  • Increase in data collected per disease
  • Data to be reported on Day 0, in addition to the 100 day and follow up reports

 Benefits

  • Improved scientific output of the EBMT, Centres and National Registries
  • Need for data manager/physician collaboration
  • By submitting data as close as possible to the event (Day 0 data submitted within a week of the transplant; Day 100 data submitted at day 100) we expect to increase the accuracy of the data and to facilitate the work of data managers.

Drawbacks

  • Increased workload for data managers

Other main structural changes

  1. Capturing events between transplants: Users are requested to enter a follow up when they enter a subsequent transplant that has not had a recent follow up. (This will help to capture relapse data and other events between transplants).
  2. Improvements to donor and product data storage: when multiple products from the same donor are used, they are captured in the same Donor record, rather than having to create one Donor record per product as done in the past. (Retrospective data will eventually be transferred to the correct place).
  3. Lymphoma disease status at time of HSCT: this section has been changed substantially. Please read all the questions carefully before answering. The Lymphoma Working Party (LWP) believes the new way is simpler to fill and will convey more accurate information for subsequent studies. Full details will be integrated into the MED-AB manual.

Timeline for MED-B

The next step is to adapt the MED-B to incorporate the new MED-A fields and structure. MED-B users should continue with the MED-B in its current format until further notice. We aim to fully implement the MED-A compatible MED-B in Spring 2016.

Support 

Thank you to all centres who have been reporting using the new MED-A since its launch in December 2015. We are very grateful for your help and time in becoming more familiar with the new structure.

Although the new MED-A items have been finalised, we are making minor improvements to the form on a regular basis and would encourage users to always download the latest version of the forms and manuals from our web page.
 
The MED-AB manual is under review, and will be updated regularly with the help of the EBMT Definitions Group
 
The User Guide to ProMISe 3 is also under review to ensure it is compatible with the latest MED-A and ProMISe version. Education & Training at EBMT 2016 in Valencia will include the new MED-A, and more info on the Data Management Sessions is included below
 
The Information Analyst in the Registry Office, Babatunde Oyenuga, is working on a module to enable us to work with form sections. When this is available, we hope to reduce some pages and printing for paper form users.
 
As always, if you have any questions regarding the data or database please contact us at registryhelpdesk@ebmt.org

EBMT 2016: 15th Meeting of the Data Management Group

We very much look forward to welcoming all participants in Valencia this year, where a varied programme of DATA MANAGEMENT EDUCATION SESSIONS and EBMT REGISTRY DATABASE (PRoMISe) TRAINING SESSIONS will be on offer.
 
The EDUCATION SESSIONS are open to everyone and will aim to improve your knowledge of the field of Data Management. The sessions will be of interest to everybody, regardless of your background area. Some sessions will have a scientific content and some will have a more general theme. We very much encourage active participation in sessions, raising issues and requesting clarifications so that we can all learn from each other. Click here to view the online programme. 
 
We will also be offering practical training sessions for the EBMT REGISTRY DATABASE (ProMISe) in: Data Entry, Data Retrieval, HLA Data Entry and Exports & Sharing Reports. Please register in advance for these training sessions via the Data Management Education section of the EBMT web site.

Donor data needed for new Donor Outcomes Registry

*** survey *** 

 This survey also contains a question regarding autologous settings 
 
EBMT has implemented a platform for a Donor Outcome Registry in the EBMT ProMISe database. There are, at this moment, several proposals that could support EBMT in setting up this important initiative.
Therefore we want to ask you to please complete a few questions in the Donor Outcome Registry Survey that will help us assess the feasibility of the different projects as well as estimate the general interest in completion of the donor registry.
 
The link below will take you to the survey: 
https://www.surveymonkey.com/r/donorregistry
 
The survey consists of three parts. It starts with general questions on products used for mobilisation in healthy donors, followed by questions specific to the biosimilars Accofil and Nivestim. The survey ends with a few more general questions. Parts of the survey may be skipped when questions are irrelevant to your situation.
 
We would appreciate to receive your response at your earliest convenience.
Should you have any questions or concerns, please do not hesitate to contact us via cmwpebmt@lumc.nl 
 
Sincerely,
 
Jörg Halter - Chair Donor Outcomes Committee   
Nicolaus Kröger - Chair Scientific Council         
Anna Sureda - Secretary Executive Committee
EBMT Registry Office London
 
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