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Data Submission

In this section, you will find information about the process of submitting data, application forms and user guides & training videos


 

What?

The EBMT requests from all member centres that all patients undergoing an HSCT, treatment for aplastic anaemia, or any other type of cell therapy be registered in the EBMT Registry.  This can be done by submitting a set of EBMT data collection forms, preferably completed Med-B forms. If this is not possible, the centre should submit completed Med-A forms. 

A document with instructions to submit data to the EBMT is available and should be downloaded the first time these forms are used. It contains information on the forms, how to fill them in and where to send them once they have been completed. Questions must be read carefully before completing. Titles and subtitles provide information on when certain questions should be filled in. If the information requested in the MED-AB paper forms is unavailable because it has not been evaluated or because it is definitely unknown, this must be clearly stated, thus preventing the EBMT data managers from having to ask this question again. Note that the information requested in the MED-A form -and its equivalent in the MED-B forms- is mandatory and cannot be "unavailable" as it constitutes the minimum essential data. Transplants cannot be performed without it being available.


 

When?

The registration of patients should be a continuous process throughout the year and should be sent on the day of transplant (or within a week of day 0), then the remainder at 100 days post-transplant or at time of death, whichever occurs first. Patients who die between conditioning and transplant should also be reported.


The EBMT requests follow up at yearly intervals. When exactly it will happen will vary from centre to centre. Data checking by the EBMT is a continuous process and proceeds all year round. The guidelines on follow up submission  are as follows:

  • Every year if the patient was transplanted less than 10 years ago

  • Every 2 years if the patient was transplanted 10 - 20 years ago

  • Every 5 years if the patient was transplanted more than 20 years ago

 

How?

Registration involves providing the EBMT with the data contained in the MED-A or B data collection forms for each HSCT. All data should be entered directly in the EBMT database using Internet access (see ProMISe). A small number of National Registries enter data on behalf of their centres. Please contact your National Registry if applicable.

 
Entering data directly

Personal, non-transferable usernames and passwords will be assigned to those entering data on behalf of their team. The request for Data Entry access must be made to the Registry Office by faxing the ProMIse personal password request -data entry. All individuals must be authorised by the Principal Investigator (PI) of the centre where they work. We will check the name of the PI against the EBMT membership list. Data Entry access gives the user access to all functions: Data Entry; Reporting and Downloading centre’s data. 
 

IMPORTANT: Usernames and passwords are unique to the individual and are not transferable.  Centres must ensure that the proper legal requirements regarding patient consent to data transfer and data confidentiality have been met before submitting data. E-mail requests for passwords will not be accepted. 

 
Access to patients given a prior HSCT in a different centre

All data pertaining to one patient must be entered under the same patient registration, even if a patient has different treatments in different centres. 

To assist this process, we have designed a data access request form for centres to complete, enabling us to search the full database for existing registrations. On receipt of your signed form, we can make the previous data available to your centre - if the patient has been registered - so that you can enter the subsequent data. The form can be signed by any individual from the centre that has already permission to enter data. 

*Centres in Austria, Germany, Italy, The Netherlands, Switzerland and the UK, can contact their national registry data manager directly to request this access if the patient had their prior transplant within the same country. 
 

User guides & Training videos for Data entry
Note: videos are going to be updated to match the new MED-A version 
 

 

User guides (English):

USER GUIDE TO PROMISE 4 (English)
HLA Data Entry Guide specifically addresses entry of HLA typing results

User Guides (other languages):

GUIA DE USUARIO DE PROMISE 2.2 (Spanish) 
GUIDA A PROMISE 2.2 (Italian)
HANDLEIDING VOOR PROMISE 2.2 (Dutch)
GUIDE DE L'UTILISATEUR DE PROMISE 2.2 (French) 

 

Training videos (English):

MED-A Data Entry training​

HLA Data Entry training

Data Entry Problems – How to avoid them, how to solve them​

Please see Data Retrieval section for related guides & videos

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 News

 
10/07/2017
Creation of a new EBMT Legal & Regulatory Affairs Committee (LRAC)... Read more >>
21/06/2017
June 2017 | Vol. 57 - Issue 3 ... Read more >>
17/05/2017
The EBMT implements Elsevier’s MACRO platform to upgrade patient registry.... Read more >>
05/10/2016
​EBMT TV returns to 2017 Annual Meeting... Read more >>
26/09/2016
​The EBMT has contributed to the Innovative Medicines Intiative... Read more >>
10/05/2016
​More than 60 EBMT centres have already started entering their related donor data. We want to invite... Read more >>
 

 Events

 
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