Invitation for participation: MDS and MPN (myelofibrosis) Data Quality Initiatives and Liver Toxicity studyWe 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
Association between Uric Acid Levels and Graft-versus-Host Disease
A non-interventional prospective study by the CQLWP.* This study is still recruiting *
Danger signals are increasingly recognized to play a role during the pathology of graft-versus-host disease (GVHD)1. Uric acid acts as a danger signal and is released from injured cells during conditioning for allogeneic hematopoietic stem cell transplantation (allo-SCT). Recently, it has been demonstrated in preclinical models that uric acid contributes to GVHD2. In a small pilot trial in the Massachusetts General Hospital, the depletion of uric acid with Raspuricase prior to allo-SCT led to a reduced incidence of GVHD (ASH 2012 Abstract 3063, Brunner et al.). Retrospective data from clinical studies is contradictory: GVHD was associated to low uric acid levels prior to allo-SCT in two independent cohorts (EBMT 2015 Abstract 551)3. On the other hand, different investigators found that high uric acid levels were associated to increased GVHD severity (EBMT 2015 Abstract 548) and to increased incidence of VOD (EBMT 2015 Abstract 605). Taken together there is strong evidence that danger signals, such as uric acid, may impact allo-SCT outcome.
We are conducting a prospective study to assess uric acid levels of patients undergoing allo-SCT and correlate them to clinical outcome. The study will contribute to a better understanding of the role of danger signals during inflammatory diseases such as GVHD. The results may be used as clinical rationale for a prospectively randomized trial on depletion of uric acid for GVHD prophylaxis.
Study period: Start July 01, 2014
We are aiming to collect 400 patients. Currently 75 patients are included.
- MED B/C form
- Uric Acid measurements prior and as close to day 0 of allo-SCT as possible
Participating centers, please include your patients
If you would like to participate or need more information regarding this study, please contact Steffie van der Werf from the EBMT Data Office in Leiden via CQWPebmt@lumc.nl
1. Zeiser R, Penack O, Holler E, Idzko M. Danger signals activating innate immunity in graft-versus-host disease. J Mol Med (Berl). 2011;89(9):833-845.
2. Jankovic D, Ganesan J, Bscheider M, et al. The Nlrp3 inflammasome regulates acute graft-versus-host disease. J Exp Med. 2013.
3. Ostendorf BN, Blau O, Uharek L, Blau IW, Penack O. Association between low uric acid levels and acute graft-versus-host disease. Ann Hematol. 2015;94(1):139-144.
|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|