In this section, you will find information about the process of submitting data.

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 done at 100 days post-HSCT or at the time of the patient's death, whichever comes first. This includes patients who die between conditioning and HSCT.

Some national registries may have different regulations requiring registration to be done before 100 days (for example, on leaving the isolation unit). This is acceptable as long as: a) this happens before 100 days after HSCT; and b) an update on response, engraftment, etc. is produced when 100 days have elapsed. 

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.

How?

Registration involves providing the EBMT with the data contained in the MED-AB registration forms for each HSCT. Submission can be done either by entering data directly in the EBMT database using Internet access (see ProMISe) or by filling in the appropriate paper forms and mailing them to the EBMT Registry Office or to the office of the centre’s national registry, if it exists. 

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 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 for Data entry

New users are encouraged to try the ProMISe2 Demo and to try out the functionalities described in the user guide: 

USER GUIDE TO PROMISE 2.2 (English)
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)

 
Implementation of the new HLA nomenclature specifically addresses entering HLA data and the 2010 changes to HLA nomenclature.