Since 1990, the EBMT has carried out the annual Transplant Activity Survey to prospectively collect numbers of patients treated with a haematopoietic stem cell transplant (HSCT) according to indication, donor type and stem cell source. Any clinical units that perform any type of stem cell transplant can participate in the survey whether they are members of the EBMT or not.
The Transplant Activity Survey has become a tool for assessing the real picture of HSCT in Europe: exposing trends, illustrating the current status and providing essential data for counselling and planning. Its structure, standardised over many years, and the excellent commitment by the participating teams make it possible to observe changes over time and to evaluate factors associated with such changes. This Activity Survey is relevant to individual transplant teams, national organisations, health care agencies and the industry as well as patients. All transplant teams are strongly encouraged to join the survey.
When & How to submit survey data
Survey data requests are sent to the centres in December of the year being surveyed and are collected during the first half of the following year. The 2019 survey is now open, the first deadline for submission of the 2019 data is March 15th. 2020.
The data is captured via a single page A4 questionnaire, whereby each transplanting team can report their entire annual activity by indication, donor type and stem cell source. It allows the reporting of first allografts, of first autografts and of additional transplants performed due to disease progression, engraftment failure or as part of a planned multiple transplant protocol (table 1, rows 1-31). Paediatric transplant activity (<18 years at transplant) can be reported both in the main table by indication, donor type and stem cell source and additionally in row 32. Entering the total numbers of paediatric patients additionally in row 32, enables us to perform a separate overview of the paediatric and adult data. The number of patients receiving un-manipulated donor lymphocyte infusions in 2019 can be reported in row 34.
Table 2 is dedicated to the reporting of non HSCT cell therapies.
Report the number of patients receiving cell therapies using manipulated or selected cells in your centre in 2019 by indication and donor type in rows 35-42. Report the number of patients and not the number of infusions: E.g., a patient with three NK infusions is counted as one patient. Cell therapies can be reported within or outside of the context of HSCT.
Please also report patients treated in clinical trials, as this survey does not affect any confidentiality issues and provides an overview of how many therapies are performed in Europe each year.
If submitting electronically:
- Download the EBMT survey on transplant activity 2019 excel document below.
- Save the file to your Desktop or another easy to remember location.
- Name the file "CIC (your number)". If you do not have a CIC number, call the file after the name of your institution.
- Complete the data fields.
- Email the form to the survey coordinator. Details are in the contact section below.
If submitting by hand, download the EBMT survey on transplant activity 2019 excel or pdf document below. Follow steps 2-4 above, then mail, fax, or scan and email the form to the survey coordinator. Details in the contact section below.
Forms & Guidelines
Before you complete the Survey, please read the Data Reporting Guidelines below. The survey is available in excel and pdf format and should be completed in the manner indicated in the How & When to Submit Survey Data section above. We have also provided two additional documents: the MED-AB forms manual, whose Appendix III contains the agreed definition for non-myeloablative conditioning used in reporting to this survey; and the List of Disease Classifications, containing a list of diseases indicating under which main category they should be reported.
Note that the MED-A data reported to the EBMT Registry is not automatically included in the Activity Survey. Even if you report your transplant data to the EBMT electronically with the ProMISe system or by forwarding paper MED-AB forms to the EBMT or National Registry offices, please report to this survey too.
How can I see the results?
Data from the most recent survey year are presented at the EBMT annual meeting and are available to participating teams and sponsors. If you are an EBMT Member and if you want to access the most recent data, please contact the Activity Survey Coordinator.
External persons or organisations may also apply for access to the survey data against payment of a fee. Please provide detailed information about the data required and its intended use to the Activity Survey Coordinator, who will assess the feasibility of the request before passing it on to the EBMT for approval and costing.
Please note that some of these data may not have been published and should be treated as confidential. It is for internal use only and may not be used for publication without obtaining prior consent.
Activity Survey data is published as a peer reviewed publication in Bone Marrow Transplantation each year. A full set of slides is prepared annually showing the trends and developments over the years. A selection of these slides is available on request. Individual analyses maybe requested by the EBMT Partners of Excellence and participating teams upon justification of its use.