Severe Aplastic Anaemia Working Party (SAAWP)
Study type:
Study number:
8409073
Type of transplant / Cell therapy:
Allogeneic
Diseases:
Bone marrow failure
Short title:
Primary objective:
Describe the natural history of patients with SAA and/or PNH that evolve into a myeloid disease.
Key inclusion criteria:
Population: AML/MDS or any karyotypic abnormality secondary to a SAA or PNH diagnosis. We filter these abnormalities after the extraction
Comparision: SAA patients without karyotypic abnormality from the same centers as above
Starting point [T0]: SAA diagnosis, preferably. Otherwise, ATG
Time frame: diagnosis of SAA from 2000 onwards
Comparision: SAA patients without karyotypic abnormality from the same centers as above
Starting point [T0]: SAA diagnosis, preferably. Otherwise, ATG
Time frame: diagnosis of SAA from 2000 onwards
Country:
All EBMT member countries
Principal investigator:
Pedro de Lima Prata
EBMT Study coordinator:
Brian Piepenbroek
Study coordinator email:
saawp@ebmt.org
EBMT Study Unit:
Leiden Study Unit
Reason for processing personal data:
Research and Development of new and improved transplant, cell therapy and immunosuppression procedures.
Categories of personal data collected:
Medical data already reported to the EBMT Registry
Study Specific Questionnaire (MED-C)
Recipients who may access the data:
Leiden Study Unit
Statistical Unit
3rd-party processors of Personal Data on behalf of EBMT/Service provider:
Non
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