Severe Aplastic Anaemia Working Party (SAAWP)
Study type:
Study number:
84090102
Type of treatment:
Allogeneic
Diseases:
Bone marrow failure
Short title:
SAA MUD >30
Primary objective:
To identify the most discriminant pre-transplant risk factors associated with worse 2-year OS of SAA patients receiving an allogeneic transplant from MUD in the period 2010-2021.
Key inclusion criteria:
SAA patients, >30 years old at treatment, receiving allo-HSCT from a MUD in the period 2011-2021. Only first transplant for SAA, acquired
Country:
All EBMT member countries
Principal investigator:
Régis Peffault de Latour
EBMT Study coordinator:
Joe Tuffnell
Study coordinator email:
saawp@ebmt.org
EBMT Study Unit:
Leiden Study Unit
Reason for processing personal data:
Patients’ data is needed to be able to identify the patient and calculate age at any time (impact on SAEs and response to clinical medications). Health care personal data is part of the CV collected for evidence of proper qualification for running the trial.
Categories of personal data collected:
Medical data already reported to the EBMT Registry
Recipients who may access the data:
Leiden Study Unit
Statistical Unit
3rd-party processors of Personal Data on behalf of EBMT/Service provider:
No
Privacy notices
Article 6 lawful basis for processing personal data:
Article 6.1 (a) - Consent (Collection)
Article 9 basis for processing special category data:
Article 9(2) (a) - Consent (Collection)
Data Protection Impact Assessments
Rights available to individuals:
Access
Data portability
Rectification
Objection
Deletion
Is a Data Protection Impact Assessment required?:
DPIA performed for EBMT Registry (WP & NIS Studies)
Retention Schedule (if possible):
at least 5 years after the final report or first publication of study results