The SAAWP reports on Aplastic Anaemia (AA) and other rare acquired and inherited bone marrow failure disorders.
The SAAWP provides essential data on outcomes after treatment from large numbers of patients that can only be obtained from large registries like the EBMT. It also provides important clinical information needed to help classify and characterise the disease and data on the natural history of the disease and late effects that occur after treatment.
The SAAWP holds the Aplastic Anaemia (AA) database that is the only “disease-specific” database within the EBMT. Data are collected not only on patients receiving transplants but also other forms of therapy, including immunosuppressive therapy.
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.
- 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: firstname.lastname@example.org.
Collection of patient data will end by October 1st, 2021.
Stefano Giardino – Principal Investigator
Brian Piepenbroek – SAAWP Data Manager
Anne Lippinkhof – SAAWP Study Coordinator
Antonio Risitano – SAAWP Secretary
Régis Peffault de Latour – SAAWP Chair
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 email@example.com.
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
SAAWP Publications List
Guidelines, Consensus Statements, and Position Papers
The EBMT announced the results of the phase III RACE trial during EBMTs virtual 46th Annual Meeting.