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Allogeneic Hematopoietic Stem Cell Transplantation for ERCC6L2 disease

Severe Aplastic Anaemia Working Party (SAAWP)
Study type:
Study number:
84090094
Type of treatment:
Allogeneic
Diseases:
Bone marrow failure
Short title:
Allo HCT for ERCC6L2
Primary objective:
We aim to investigate detailed characteristics and outcomes of patients with biallelic germline mutations in ERCC6L2 who undergo allogeneic-HSCT. In addition, we aspire to explore comprehensive diagnostics and treatment strategies in evaluation of the timing of allogeneic-HSCT for patients with ERCC6L2 mutations.
Key inclusion criteria:
 
Country:
All EBMT member countries
Principal investigator:
Ulla Wartiovaara-Kautto, Outi Kilpivaara and Flore Sicre de Fontbrune
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
Investigators
3rd-party processors of Personal Data on behalf of EBMT/Service provider:
Not applicable to surveys

Privacy notices

Article 6 lawful basis for processing personal data:
Not applicable to surveys
Article 9 basis for processing special category data:
Not applicable to surveys

Data Protection Impact Assessments

Rights available to individuals:
Access
Data portability
Rectification
Objection
Deletion
Is a Data Protection Impact Assessment required?:
Not applicable to surveys
Retention Schedule (if possible):
Not applicable to surveys