The following list represents Studies for which calls for participation are currently open. Learn about the individual studies below, and click the link to find out more about the Working Party responsible for the study.
Dear colleagues,
The Severe Aplastic Anemia Working Party (SAAWP) is currently conducting a retrospective study to assess the outcome of patients affected by congenital BMF after haploidentical HSCT.
Inclusion criteria:
- All congenital BMF syndromes before first haploidentical HSCT
- First haploidentical HSCT between 1990-2019
- Stem cell source: bone marrow or peripheral blood (manipulated or unmanipulated)
We have searched the EBMT registry for eligible patients and sent data requests to centres with identified eligible patients. If you would like to receive additional information, please contact Brian Piepenbroek at: saawpebmt@lumc.nl.
Collection of patient data will end by October 1st, 2021.
Sincerely,
Stefano Giardino – Principal Investigator
Brian Piepenbroek – SAAWP Data Manager
Anne Lippinkhof – SAAWP Study Coordinator
Antonio Risitano – SAAWP Secretary
Régis Peffault de Latour – SAAWP Chair
The Chronic Malignancies Working Party (CMWP) of the EBMT would like to invite you to participate in a study called: “Post-Transplant Cyclophosphamide as GvHD Prophylaxis for Allogeneic Hematopoietic Stem Cell Transplantation for Myelodysplastic Syndrome as Compared to Standard GvHD Prophylaxis”.
The objective of the study is to evaluate the outcome of patients with MDS who underwent allogeneic HSCT and received GvHD prophylaxis with cyclophosphamide post-transplantation compared to those who received Antithymocyte Globulin (ATG). The primary endpoint of the study is GvHD-free/relapse free survival (GRFS).
Please note: to reduce the workload for your centre, we decided to randomly select a maximum of 15 ATG patients for inclusion.
If your centre wishes to participate, please contact Laurien Baaij at cmwpebmt@lumc.nl to receive the excel file with prefilled patient data.
The Chronic Malignancies Working Party (CMWP) of the EBMT would like to invite you to participate in three studies all focused on allogeneic hematopoietic stem cell transplantation (alloSCT) for patients diagnosed with Chronic Lymphocyte Leukemia (CLL).
AlloSCT after Multiple Pathway Inhibitors:
We hypothesize that many nowadays transplanted patients for CLL have been pretreated with at least two pathway inhibitors (PI). The aim of this study is to describe the outcome of alloSCT of these patients in terms of PFS, OS, cumulative incidence of relapse (CIR) and NRM.
AlloSCT after stopping Ibrutinib for intolerance or relapse:
The aim of this study is to describe the outcome of alloSCT in CLL patients that were transplanted after Ibrutinib cessation in terms of PFS, OS, CIR and NRM.
Venetoclax before and after alloSCT for CLL:
Venetoclax is currently more and more widely used for relapsed CLL. Data on the use of Venetoclax before alloSCT or after alloSCT in the event of relapse or persistence of a detectable residual disease are lacking. The aim of this study is to describe the outcome of alloSCT in CLL patients that were transplanted after venetoclax use and/or treated with venetoclax after alloSCT in terms of PFS, OS, CIR and NRM and the response rate, PFS and OS in case venetoclax was given after alloSCT.
If your centre wishes to participate, please contact Nadia Erazo Castillo at cmwpebmt@lumc.nl to receive the excel file with prefilled patient data.
As haematologists, we rarely treat patients of the demographic included in these vaccine clinical trials. In addition, there is a reporting bias within the literature favoured towards positive events, e.g. relapse AA. To study the impact of SARS-CoV-2 vaccination, a wider review for AA and/or PNH patients undergoing SARS-CoV-2 vaccination is proposed. You are kindly invited to join this study and contribute your patient data.
Patients are eligible if:
- they have been diagnosed with AA and/or PNH, irrespective of vaccination status;
- they have received the first SARS-CoV-2 vaccination before 01-08-2021;
- they are under active follow-up (to allow CRF completion);
- they have not yet undergone a bone marrow transplant.
Patients who are not eligible:
- Patients who have undergone bone marrow transplant;
- Paediatric patients due to vaccinations not currently being undertaken in this population, this may be revisited at a later date.
All required study forms are available below.
Patient registration can be performed after vaccination of the patient has started. For patients invited but not receiving vaccination, the reasons for this are of interest with a limited CRF completion at 3 months.
Data will be collected with a follow-up of 3-, 6- and 12-months post first vaccination. Because of the long follow-up, we would like to receive the CRF at two different timepoints: at 3 months and at 12 months post first vaccination. Please send your completed CRFs, password-secured, to Inge Verheggen at saawpebmt@lumc.nl.
On behalf of the IDWP and the SAAWP, thank you for your kind cooperation!
Morag Griffin – Principal Investigator
Peter Hillmen – International PNH interest Group and PNH registry Chair
Per Ljungman – Study Investigator
Inge Verheggen – COVID Team Data Manager
Dina Averbuch – IDWP Secretary
Rafael de la Camara – IDWP Chairperson
Antonio Risitano – SAAWP Secretary
Régis Peffault de Latour – SAAWP Chairperson
The impact of the new coronavirus SARS-CoV 2 on immunosuppressed patients such as stem cell transplant recipients and CAR-T cell recipients has been significant. However, there is still a lot of missing knowledge. The Infectious Diseases Working Party of the EBMT therefore has collected data since early March 2020. This activity is still ongoing and we believe it is of major importance to continue collecting information. We therefore hope you are willing to continue participating in the ongoing prospective survey about the impact of COVID-19 on patients having undergone stem cell or CAR T cell therapy in the data registration.
The survey is in 3 steps:
- Please fill in the registration form for each patient diagnosed with covid-19 at your center and submit the completed form to the EBMT IDWP Data office.
- After resolution of the episode, we will collect more information regarding the COVID-19 infection and its outcome. Please fill in the follow-up form.
- We will thereafter merge the information with the MED-A form to get the basic patient information. Therefor, please make sure the patient is registered in the EBMT database
Extension of the inclusion
We also want to understand what happens if patients with a recent COVID-19 undergoes either stem cell transplantation or CAR T cell therapy. This is a complementary form to the registration form. If you have such patients, please fill in the form and thereafter also the follow-up form for such patients. If the number of patients exceed the number of slots on the form, please, add a 2nd form.
All the forms are available below and are protected with a password: covid_idwp
Contact
For any question about this survey, please email idwp.ebmt@lumc.nl. If you do not wish to participate, please let us know as well.
Per Ljungman
Rafael de la Camara
Nicolaus Kröger
Jan Styczynski
Stephan Mielke
Malgorzata Mikulska
Patients who underwent HSCT, both allogeneic or autologous, between January 1st, 2021 and December 31st, 2022 and developed an infectious (any CTCAE grade) or relevant (CTCAE >1°) non-infectious CNS disorder after HSCT in this period can be included in this study. If you'd like to receive more information, or if you have an eligible patient, please contact the IDWP data office (email can be found below) and we will send you the registration form and all other required information to join our study.