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.
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.
In view of the delays in vaccination in Europe, the registration period for this study has been extended to include all adult patients who have been invited for first vaccination by 30/06/2021. Patient registration will close on 30/07/2021.
Patients are eligible if:
- they have been diagnosed with AA and/or PNH, irrespective of vaccination status;
- 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 before or 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 firstname.lastname@example.org.
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 SAAWP is currently conducting a retrospective study evaluating the use of androgens in BMF disorders in EBMT centers. Patients diagnosed with an inherited or acquired BMF between 2000 and 2019, and receiving an androgen-based treatment along their disease course, before or in the absence of allogeneic HSCT, are eligible for this study, regardless of their age. All patients receiving a transplant before androgen’s use do not qualify for this study.
We have identified more than 200 eligible patients in the EBMT registry. We are aiming to increase this sample size and have a more comprehensive outlook of the current use of these compounds in BMFs. If your centre wishes to participate, please contact Brian Piepenbroek at email@example.com to receive the study documents necessary to submit your patient data.
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.