EBMT NEWSLETTER | November 2015 | Volume 49 - Issue 1

Important dates
  1. Invitation for participation: MDS and MPN (myelofibrosis) Data Quality Initiatives and Liver Toxicity study
  2. The Effect of 2nd generation TKI on the outcome after allogeneic SCT for Patients with CML
  3. Resistance Pattern of Gram-negative Bacteria Isolated from Blood from HSCT Recipients
  4. The CALM study

Invitation for participation: MDS and MPN (myelofibrosis) Data Quality Initiatives and Liver Toxicity study

We would like to invite you to participate in retrospective studies designed to improve the Data Quality of the EBMT registry for MDS and for MPN.
The Data Quality Initiative (DQI) studies will focus on the impact of the pre-graft treatment on the response of the post-graft outcome. To do these studies, essential data should be updated: i.e. pre-treatment, cytogenetics,  comorbidities, GvHD prophylaxis, as well as follow up information.
These Data Quality Initiatives (DQIs) aim to include more patients with complete data. Besides above study, future studies would also benefit from these DQIs.
We would also like to invite you to participate in a retrospective study called “Prevalence of liver toxicity in the early post-transplant period in patients with myelofibrosis”. For this study a possible patient fee is available.
The aim of the liver toxicity study is to analyze post-transplant liver toxicity in patients with Myelofibrosis.
To participate with the MDS DQI, please fill in the following survey https://www.surveymonkey.com/r/KP36S8W
To participate with the MPN DQI and Liver Toxicity, please fill in the following survey

The Effect of 2nd generation TKI on the outcome after allogeneic SCT for Patients with CML

A Non-Interventional Prospective Study by the CMWP

THIS STUDY IS CLOSING SOON! The last time points for the patients are expected in the coming weeks. 
The collection of MED B/C and follow up data is well under way. The past months we have been receiving a lot of study forms and excel documents with the last data for your patients in this study.

Please check whether you have submitted all forms for your patients and please check especially whether the MED C form was sent to us as this form contains the questions specific for 2nd generation TKIs.
  • Study MED B
  • Day+100
  • MED C
  • Yearly follow up
We thank all participants for their ongoing cooperation in this important study!
MPN subcommittee of the Chronic Malignancies Working Party
For  study forms or information about the study, please contact Jennifer Hoek, study coordinator at the EBMT Data Office in Leiden, via j.d.c.hoek@lumc.nl

Resistance Pattern of Gram-negative Bacteria Isolated from Blood from HSCT Recipients

A non-interventional prospective multicentre study by the IDWP to determine the incidence and pattern of antimicrobials resistance among Gram-negative bacteria isolated from blood in HSCT patients during the first 6 months after the transplantation.

Please submit your last episodes and please make sure your patients are registered in the EBMT Registry.
* Please note that the inclusion of new patients continued until May 25th, 2015.*

This means that all participating centres should submit their cases of gram-negative bacteremia for all patients transplanted before 25 May 2015.
Patients transplanted until May 25th will have to be followed for 6 months to see if they develop a case (meaning the latest episodes until November 25th, 2015). 

The study will close on November 25th, 2015.
  • Med C forms of all bacteremic patients will need to have been submitted to the EBMT Data Office three months after each episode.
  • Episodes occurring in the period September-November 2015 need to be submitted as soon as possible, latest by the end of December 2015.
  • Med A for your patients during the study period (since you started including patients and until 25 May 2015) will need to be entered in the EBMT registry by the end of November 2015.

We are happy to inform you that at this moment over 600 episodes have already been reported to us!

The IDWP thanks all participating centres for the wonderful effort they have put in.
When you have any questions or concerns,  please contact Jennifer Hoek of the EBMT Data Office via idwpebmt@lumc.nl 

The CALM study

Collaboration to Collect Autologous transplant outcomes in Lymphoma and Myeloma patients

Data collection follow up data
Data collection for the Follow-up data is still ongoing. Patients enrolled in 2008 and 2009 will be followed up until the end of 2014, while those enrolled from 2010 to 2012 will be followed up until the end of 2015. Participating sites have received a helpful overview for the annual Follow Up forms, per year per patient. Please send your annual Follow Up forms to the Leiden Data Office or enter the Follow Up data directly into ProMISe.
* The data collection for the follow up data is still ongoing *
Annual follow up Deadline
Years 2008 - 2011 31 December 2014
Year 2012 31 December 2014
Year 2013 3rd quarter 2015
Year 2014 3rd quarter 2015
Year 2015 End of 2015
  * Please send in you follow up data *  

Data quality Excel files
In July and August we have send out missing data files for the Follow Up data in the same way we have send the quality checks for the baseline data. The deadline to submit the Follow up file was November 01, 2015.  Individual cases for deadline extension will be reviewed by the data office.
CALM study coordination
Any CALM study related correspondence/questions can be send to Paul Bosman or Steffie van der Werf  via e-mail address: calmebmt@lumc.nl

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