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Data Submission

Data Submission 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 into the EBMT database using Internet access via ProMISe. 

Read the two documents below for information about optimising your data submissions. The rest of the page contains information about how to request access to the ProMISe database.

To enter 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. Contact details are included in the application form below.

If you would like to request access to the ProMISe demo version before beginning, contact registryhelpdesk@ebmt.org.

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 another center

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 in 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 already has 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. 

When should data be submitted?

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 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

National Registries

A small number of National Registries enter data on behalf of their centres. Please contact your National Registry if applicable. More information is available on the Data Sharing page.

Need help?

The personal data provided will be processed according to the General Data Protection Regulation (GDPR 2016/679 ) and incorporated to a file property of EBMT which will be allocated in the EEA (European Economic Area) or in countries that are provided with the same level of protection for privacy such as countries that adhere to EU-US and Swiss-US Privacy Shield Frameworks.
Data Subjects have the right of access to his or her data and the right to rectification of any inaccurate or incomplete personal data. The Data Subject also has the right to withdraw consent, this wish will be respected, and the personal will no longer be made available. If the processing operation is unlawful the Data Subject has the right to request deletion of that data. Please write to data.protection@ebmt.org