EBMT NEWSLETTER | November 2017 | Volume 59 - Issue 5

Important dates

G-CSF trial on SAA patients treated with ATG and CSA with or without G-CSF
Data Quality Initiative of the SAAWP
Join the CMML Data Quality Initiative
Transformed Fanconi Anaemia
CTIWP survey to identify current policies to monitor post-transplant immune reconstitution

G-CSF trial on SAA patients treated with ATG and CSA with or without G-CSF

Between 2001 and 2008 the Severe Aplastic Anaemia Working Party of the EBMT performed a prospective randomized G-CSF trial on patients with acquired severe aplastic anaemia (SAA) treated with ATG and CSA randomized for G-CSF, including one or several patients. (Tichelli et al. Blood. 2011;117: 4434-4441). Now, nearly 10 years after the inclusion of the last patient we would like  to collect updated information on these patients. This follow-up is of importance because it is a unique opportunity to evaluate the long-term outcome and possible late complication of SAA patients treated with or without G-CSF.
We are trying to contact all centres who participated in this trial to request an update of the patient status. Did you (or your centre) participate in this trial and you did not receive an invitation to provide follow-up on your patients? Please send your email to saawpebmt@lumc.nl.

Data Quality Initiative of the SAAWP

This year we started a Data Quality Initiative in the SAAWP to improve the quality of the data already available in the EBMT registry database. In March 2017 Excel files with ProMISe data have been send to more than 300 centres. We are very grateful for the files that have been completed and returned thus far! We realise that completing the Excel file requires an investment of your time and manpower. So why help us out?
  • At least 5 new proposals as well as many future studies will use the data made available by these initiatives.
  • Principal investigators from centres that contributed their patient data will be considered as co-author of the resulting publications.
  • In addition to increasing the scientific output, we anticipate that the future workload regarding the provision of missing data will be reduced.
Therefore we want to encourage you to participate in this initiative and to return the Excel file. The initial deadline for this initiative
If you have questions, please contact Cora Knol or Paul Bosman of the EBMT Data Office via saawpebmt@lumc.nl.

Join the CMML Data Quality Initiative

We would like to invite you to participate in a retrospective study designed to improve the Data Quality of the EBMT registry for CMML.
This Data Quality Initiative (DQI) aims to include more patients with complete data regarding pre-treatment, cytogenetics,  comorbidities, GvHD prophylaxis, as well as follow up information. All future CMML studies would benefit from this DQI.
To participate with the CMML DQI, please fill in the excel file you received from us in August/September 2017 or contact us by sending an email to cmwpebmt@lumc.nl

Transformed Fanconi Anaemia

A study by the SAAWP and CMWP

The Severe Aplastic Anaemia Working Party wants to assess the outcome of patients affected by Fanconi Anaemia with MDS or acute leukaemia (Fanconi transforming to MDS or acute leukaemia) or cytogenetic abnormalities in terms of overall survival and disease free survival. The role of pre-transplant cytoreductive treatment and what is the most advisable approach in FA patients with MDS/AML remain unclear, since published studies on this topic include small numbers of highly heterogeneous patients with a variety of different therapies performed. While the largest studies on FA have lacking information on pre-transplant approaches.
Inclusion criteria for this study are:
  • First: diagnosis of Fanconi Anaemia
  • Second: diagnosis of haematological malignancy (MDS, AML, ALL), or cytogenetic abnormalities. In the years 1990-2015.
Note: Since our interest is also in pre-transplant approaches, transplant is not an inclusion criterion for this study.
Data collection will include a.o. diagnostic features, previous cytoreductive protocols, donor characteristics and outcome measures. We would like to ask you to participate in this study and share data on patients with transformed Fanconi Anaemia in your centre. Please indicate via the online survey that is available whether you have eligible patients and are willing to participate in this study: https://www.surveymonkey.com/r/transformedFA. We would be very grateful if you could fill out the survey before December 1st, 2017.
For more information or to request the Restricted MED-B/C form, please contact Cora Knol/Paul Bosman via saawpebmt@lumc.nl.

Consensus guidelines of the EBMT for monitoring post-transplant immune reconstitution

A  survey by the CTIWP  

* This survey is still open * 

The EBMT Cellular Therapy & Immunobiology Working Party (CTIWP) is conducting a survey to identify current policies to monitor immune reconstitution in patients undergoing allo-HSCT. To this end a questionnaire has been designed to cover the most used quantitative and qualitative features of immune recovery after HSCT. 

We would appreciate if you could participate in this survey, to help us designing a proper retrospective study concerning the monitoring of post-transplant immune reconstitution.
If you would like to participate or need more information regarding this survey, please contact the EBMT Data Office in Leiden via CTIWPebmt@lumc.nl 
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